Please help!

Hello, still very new to this but getting very desperate and suicidal is not an overstatement. I though I would give you my health history in order to help if anyone can. Here goes......

I've been anorexic for nearly 10 years, I have had numerous hospital and in-patient unit admissions during that time. My first hospital admission was when I was 4.5 stones and very poorly, I had taken paracetamol to help with a throat infection I had at the time, as I was such low weight, I collapsed and ended up in hospital. Even though I had only taken 4 paracetamol, spaced apart, I was admitted to the liver ward. This was about 6 years ago and my Liver Function Tests have never been the same, but my gp doesn't know why.

I wont alarm you with the other details because it is scary for me to write about, but I have been various weights and health's and have also gone through period of self harm.

About 18 months ago, I went to my Dietician as I was feeling very poorly again and she suggested getting my thyroid checked. I wen to my GP and it was on the lowest side of normal. (range 12- 22 mine was 12 then), and didn't feel it needed addressing, since then I have only got worse. I had my wisdom teeth out about 16 months ago and they were concern by my weight for the operation, so ordered a full set of bloods. As the nurse gave me my pre-op tests she noticed that my neck/throat was very swollen and ordered immediately another thyroid test, (I wouldn't have been allowed anaesthetic if my thyroid wasn't stable), and again it was low, but in range. I had my operation.

After that, in the space over 2 months I suddenly put on a lot of weight, very quickly, nearly two stone, which is horrid for anyone, but an anorexic is it hell on earth, I was back self-harming and very, very concerned about it. My GP did nothing, he was only pleased I was a 'healthy' weight! I ended up doing my own research, along with my dietician and looked into going to see somebody about my thyroid privately.

He did a variety of test and eventually put me on 25mg of Levo for 2 weeks and then 50mg, I was to have my bloods done each month at first. I had already been diagnosed with Coeliac disease by then as well. (which was no help, as I did then and do now, only eat vegetables!) I had my bloods done after a month and the private doctor rang me and got me to see him straight away, he had said I needed to reduce my Levo, as my levels had gone down, and I was on hyper, to say I was devastated is an understatement. I hadn't lost any weight, but I had stopped putting it on at least.

This was last November, and from December to February, on the lower dose, I put on another stone, my mother has now removed the paracetamol from our house.

I went back to see my normal GP and he put my Levo back up and further to 75mg a day, again this has made no difference, I actually feel worse, so in May I decided to try adding some T3, which I am now on half a 25mg tablet a day and still with my Levo. Again, this has made no difference, I don't feel any difference, so I looked into having my vitamins tested B12 especially as I don't eat any protein, or anything other than vegetables. I also had my ferritin, folate tested as well.

folate - 20 ug/L - (3.8 -16.0)

ferritin - 64 ug/L - (15 - 150.0)

vitamin B12 - 843 ng/L (197 - 771.0)

Taken last Monday, I don't understand it, I've hardly ever eaten meat as a child, and not at all in ten years, I've never had any injections or tablets, why would it be so high?

So, basically, I am desperately unhappy, I am self-harming again, and most days I don't get out of bed. I had a range of symptoms but the fatigue and weight gain are the worse. I have a lot of fluid on my body, all over but mainly on my stomach, chest and neck. I have had a thyroid ultrasound, and that was fine, I have also recently had an ultrasound on my liver which was fine as well. Also a period came back last month after ten years, to say this was traumatic, is again, an understatement (it was one of the main reasons I ended up being anorexic in the first place as they were so heavy and painful, would put my out for a week before, during and a week after, horrendous) and since then I am exceptionally hot all the time, like a am on fire and I cant remember the last time I was cool, let alone cold, which means I am hyper, doesn't it? but then why wont the weight go down?

I am so very sorry, this will probably be very long, and boring story for you all but you are my very last hope. I don't know where to go or what to do, should I find a private GP to tackle all the problems, or another private endo? Should I try NDT or thyroid S, should I do more Levo, or T3, or stop them all together. I just desperately want to lose weight (I am still an anorexic after all), and I currently eat less than 900 cals a day, but I am very hungry and have very bad cravings. I fall asleep as soon as I sit down, sometimes at the laptop! I can't always sleep at night, but always feel very stiff and achy in the morning and it takes me ages to get up. I have very itchy eyes and skin as well as cramps in my legs and feet. My legs are very swollen and my ankles are extremely painful.

My most recent test results show very little change from last month,

Serum TSH - 0.05 miu/L (0.3 -5.5)

Serum free T4 level - 15 pmol/L (12 -22)

serum free triiodothyronine - 5.8 pmol/L (3.1 - 7)

I just don't know what to do next, I am mentally exhausted, its bad enough having an eating disorder without adding unknown weight gain and leaving like death into it! And my doctors say is you are a 'healthy' weight, (even though I am now at the very top end of normal BMI !!!), and some have even said to lose weight go on a diet!!!! No, really.

Thank you greatly to anyone who has taken the time to read this, you may well save someone's life today. :(

As an edit due to the lovely replies I have had, much appreciated, you all are truly wonderful people :) .

Since my hospital admission 10 years ago, I am under the care of my local Eating Disorder Service, I have a nurse therapist, whom I see every week and a psychologist that I have also seen. I see my own private Dietician. I obviously have a bad relationship with my body and my food, I always have, but to go from 6.5 stone to 9.5 stone is extremely worrying, and I would be even if I didn't have anorexia. My height is only 5 ft 2 in, so I am now on the border of overweight BMI, which is devastating, as I have said. My have had some other test results back also -

platelet count - 117 /L (150 -450)

lymphocyte count - 1.04 /L (1.5 - 3.5)

serum potassium level - 3.9 mmo/L (3.9 - 5.3)

serum sodium level - 140 mmo/L (133 - 146)

Thanks again for all your lovely comments, and taking the time to post them.

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13 Replies

  • Bellerin,

    Your TSH is low, which is fine, FT4 is mid-range, which is good when on combination T4+T3, and FT3 is excellent in the top third of range. It looks to me as though you are already optimally medicated on T4+T3.

    Weight gain can be experienced when hypothyroid and hyperthyroid but your levels are euthyroid (normal).

    Thyroid can disrupt temperature and although most hypothyroid patients feel the cold some find they can't tolerate heat.

    B12 and folate are excellent. Ferritin is optimal 75-100 and as your periods have restarted it may be a good idea to supplement iron with 1,000mg vitamin C which will aid absorption and minimise constipation.

    Perhaps your GP can refer you to mental health services to support you with the self harming and the problems you have with your diet and anorexia.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Why can I not lose weight then and the other symptoms I outlined?

  • I'm not a doctor or nutritionist - but I've had hundred of issues including not wanting to eat. I was diagnosed with hypothyroid but now think it's Hashimoto's (thyroid antibodies). Recently I've been doing loads of online research about neurotransmitters in the brain, mainly for my son who at 35 still has ADHD symptoms & never diagnosed. But I've found it very useful for myself as my hypo has given me weird mental issues too. I watched long videos by mainly American & Australian alternative doctors talking about neurotransmitters in the brain & the amino acids which are the precursers to them. It's just an idea for you as you're so desperate. These amino acids can be found in powder form from (brilliant company)

    1. Serotonin is essential for positive mood. Low = eating disorders, insomnia, depression, anxiety, OCD, SAD. Tryptophan is the amino acid precurser, found in protein - meat, eggs, fish, dairy; but a carb meal only also allows tryptophan to enter the brain. Plus B vits, magnesium, L-theanine, omega 3, curcumin. Natural = Kava, valerian, St Johns wort (which I keep away from)

    2. Dopamine - low = no zest for life, apathy, low energy, low motivation, low libido, can't experience pleasure, a lethargic apathetic form of depression. Amino precurser is Tyrosine - in animal products, avocado, green leaf, apples, beets, oatmeal, nuts, seeds, coffee (!), a supplement called acetyl-L-tyrosine, curcumin, Bacopa Monnieri (Indian Ayurvedic herb) which regulates dopamine up & down

    3. GABA - nature's valium, which puts brakes on brain activity which, if low, gets stuck in 'on' position. Symptoms = stressed out, over stimulated, overwhelmed, insomnia. Need brown rice, citrus, fish, bananas, nuts, oats, organ meats, whole grains, unpasteurized yoghurt, probiotics with Lactobacillus Rhamnosus. Also magnesium L-theanine, Kava, exercise & yoga is excellent. The precurser amino acid is Taurine

    4. Acetylcholine - for memory, learning, focus. If low, crave fatty foods. Amino acid precurser is Choline, found mainly in high fat dairy, fish, meat, poultry, EGGS, stop coffee & drink tea. Any drug starting Anti (antibiotics, antidepressants, antihistamine etc) affects this neurotransmitter.

    I would say your thyroid levels need watching. I wouldn't advise finding a private GP to tackle all your problems. Your own GP was no doubt overwhelmed by your health & didn't have a clue. You need to find a holistic practitioner who can 'look at your whole body'- which NHS docs can't do.

    Very best wishes, x

  • ah u poor thing, I so wish I knew how to help but I'm afraid I'm new to all this I too am feeling this way. I'm not anorexic but my medical history reads much the same as yours. you aint alone n there r some very educatated people ere who will be able to give u the advice u need


  • Read this post here on Health Unlocked about Functional Medicine. They are saying there's a list of UK practitioners. x

  • Sorry you're feeling so unwell. You say you only eat vegetables, are you vegan? Your body is like an engine which needs fuel to function so I would recommend asking your GP for a referral to a dietician to make sure you're getting sufficient nutrients. Although your levels of everything look pretty good, in order to have enough energy for your metabolism to work efficiently, you also need good quality protein and healthy fats, and probably around 1800-2000 calories a day.

    Many people find the Paleo autoimmune protocol helpful:

    If you are vegan, here is some info about combing this protocol with a vegan diet:

    Also, drinking plenty of water can help relieve fluid retention, as the body holds onto water when dehydrated. Good luck x

  • I am sorry you are so unwell. Many people who are hypothyroid struggle with their weight even if optimally medicated. I think your focus on the weight issues due to your anorexia will not help your overall health. This is not something that can be looked at in isolation. I think you may have to look at dealing with the anorexia along side the hypothyroid to become healthy. With your restricted diet with no protein there is a real danger of low albumen, a plasma protein, which keeps water with in the circulation and at low levels the water leaks into the tissues causing oedema and swelling. I can see from your post that you are unhappy and desperate, please try and accept support for your anorexia and then tackle the hypothyroid. A heathy diet and some over weight is more healthy in the long term than low bmi and unhealthy depleted diet. I wish you well.

  • Hi Bellerin, I'm so sorry you've been unwell and it really breaks my heart to hear all the pain you've been in (mentally & physically). The members will try and help you.

    I too have weight issues. There hasn't been a day since I can remember when I haven't thought about my weight. Unfortunately your poor body needs to get back to health now so that your metabolism can settle down. Try and concentrate on getting healthy first and then worry about the weight - it will settle down once your thyroid medications get balanced out. Once I decided that I felt calm and I hope you will too. Please don't overdo the T3 - it will be counterproductive.

    Don't forget that people with thyroid problems often will have their metabolism slow down even more if they don't get enough calories so I know it sounds counter-intuitive, but you need to eat more to get your metabolism to speed up.

    I've read lots of success stories on this website about the weight settling down once you are on the right medication for YOU.

    Perhaps you can go and see one of the Functional Medicine Practitioners recommended by Thyroid UK so they can look at the whole picture and help you get back to health. The GP or endo alone are only part of the whole picture.

    I really wish you the best of luck sorting this out. I am sure you will once you get the right help!!!

  • I think you most likely have body dysmorphia. Your weight gain whilst unwelcome is most likely necessary and your returning periods are a sign of good health. Would you mind telling me your height and weight or is that too personal?

  • Bellerin, how much T3 are you taking? How much T4? Your FT3 is actually only just over mid-range, and it could be that you need it higher. You could try increasing the T3 a little - half a tablet, perhaps?

    Have you had your antibodies tested? It could be that you have Hashi's, and have had for a long, long time, given that you've always had period problems. If they haven't tested them, best to get them tested : TPOab and TgAB.

    Have you had your vit D tested? That is also very important. And, you could be magnesium and zinc deficient, most people are. And being hypo will make it worse. Try taking a little magnesium, and then, a week or so later, add in some zinc. But do get your vit D tested.

    You say you eat mainly vegetables, so I'm guessing that you eat a very low calorie diet. Which isn't good. Well, I'm sure you know that, already! But, when you are hypo, low calorie can make you put on weight. And, I'm guessing, you don't get much fat in your diet. Probably the thought of fat terrifies you because it is high calorie. But eating fat does not make you fat. And the body needs fat. It needs cholesterol to make hormones, etc. Butter, olive oil, lard... these are all super foods. You need them in your diet. You shouldn't be counting calories, you should be counting nutrients. :)

  • Thank you for your kind support. How often should I up my does of T3? I'm currently taking half a 25mg tablet in the morning with 75mg of Levo. I've been on this for about 2 weeks, and I check my blood pressure and pulse each night, they are always quite low, so wasn't sure whether to just try adding another half tablet at night? :) thank you again x

  • Yes, no reason why you can't add another half tablet now. And see how it goes for a few weeks.

  • Thank you very much, I will try that x

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