Help my body must be in meltdown

I have been loosing weight for about a year with no reason. I am doing nothing different to what I normally do. Now down to 8st 3lb. After much nagging from friends and family about being too thin and went to my GP. I had 2 blood tests and was referred to endo as the GP told me I had overactive thyroid. I have most of the signs which appear on websites, but definately not feeling hot, I always moan I am cold, people helpfully tell me to 'get more meat on my bones'! On Thursday the consultant gave me a very through consultation and examination as well as referring me for a chest xray. He said I was borderline over active and sent me to have my bloods done again and he would see me in 6 weeks. The following day, I had a phone call from the admin at endo to tell me to go the pharmacy to pick up levnthroxine (50mg for 2 wks and increase a further 25mgs) as I am now chronically under active. I have not taken any of the pills prescribed yet as I am confused. If they are trying to speed me up, I feel that I will loose more weight. I have looked at websites for underactive and there appears to be an overlap in some symptoms, but I do not have weight gain! Any advice would be gratefully received

40 Replies

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  • If you have your latest blood test results with their lab ranges (that's the numbers in brackets next to them) then post them for others to see.

    If you don't have them then get them from your doctor, you are entitled to have them, just say you want them for your records.

    Once you have done that people will have moreof an idea what they are looking at.

  • Many thanks for your reply. I will ask for these results and put them online. I did see some numbers on the screen in the consultants, but they meant nothing to me. I am just confused how I have gone from one to the other. I have changed nothing I am eating or nothing I am doing.

  • I'm not overweight with secondary hypo (lighter than you, but short) and low cortisol. Low cortisol can suppress appetite so I often forget to eat - very gradual weight loss over 10 years, but my face looks skinny. If the GP though you were hyper and tested only TSH, then after further testing you were told you were hypo (esp with those symptoms), you probably have secondary/central hypo (low TSH, low FT4, low FT3) and probably low other hormones as well because of a problem with pituitary or hypothalamus. Often hypo people don't absorb nutrients, which can make you lose weight as well as gain it.

    You need to get your full results wiuth ranges and also B12, folate and ferritin - cortisol would also be useful - to see whether taking B12 and an adrenal supplement would help.

  • Many thanks for your helpful suggestions, I will certainly enquire about these further tests. The worrying thing about me loosing weight is that I permanently eat. (I cannot eat a lot but graze throughout the day). You have also answered my question as to why I appeared to go from one condition to the other due to GP only carrying out bloods for what he thought was the problem, whereas the consultant probably tested for both. I now feel more confident about taking the first of the tablets tomorrow. Thanks

  • I would not take anything until your labs are understood to indicate exactly what your next move should be. None of us can blindly follow conventional medicine protocol until there is a high confidence that treatment prescribed is warranted.

    It is far safer to wait and make sure you are doing the right thing for your body. After you post your lab results, you will be able to get excellent feedback from the people here -- and you are definitely in the right place!

    Even so, you still want to be able to have an adequate level of understanding every guidance issued before acting upon it. Ask questions about anything you do not fully understand. Your overall health will thank you.

    Hugs!

  • Agreed - anything done without knowing where you are could be a bad move.

    Weight loss can happen in both hyper and hypo. For example, muscle loss is well known in hypo. Though it would seem that putting on weight is more common than losing.

    It is always important to explain weight loss.

  • Thank you, I am going to ring on Monday to try and speak to the consultant as I keep getting more and more questions which need answering.

  • interesting! is there any knowledge on, if the muscle-loss stops when a person is finally optimally thyroid hormone replaced?

    (- I am asking this from an exercise perspective; because already before the hypothyroidism (diagnosis) I noticed that there was never any muscle gain from weight training. And I am curious to know, how would it be then, if I am ever again up to weight training again.)

  • Many thanks, for something I never knew I had is causing stress not knowing what is going on.

  • Also worth getting tested for coeliac if you are currently eating gluten (test doesn't work if you aren't) as that might explain malabsorption (if that's the problem)

  • I used to only eat white bread, but i was finding myself bloated. Since changing to brown with seedy bit in my digestion seems much better better. I will raise this question also. Thanks

  • My gut instinct - could be wrong - is that he's got you muddled up with another patient!

    Think I'd query it with the endo's secretary - see if she'd be willing to tell you the results of the blood test over the phone?

  • That is a possibility I had not thought of. I thought that the bloods people could not have done this as you go in with your envelope and your identification sticker is put on the bottle whilst you are there. I will ring on Monday to double check. thanks

  • I didn't gain weight when undiagnosed hypothyroidism - I stayed at the same weight.

    When you go for blood tests for thyroid hormones always have the very earliest possible and fasting (you can drink water). Also allow 24 hours between the last dose of levo and the test and take it afterwards.

    Ask GP to test B12, Vit D, iron, ferritin and folate as we can be deficient and also thyroid antibodies .

    Always get a print-out of your blood test results, with the ranges, these are important as labs differ.

    If you ask the surgery for a print-out of your most recent results put them on a new post for comments.

  • I will certainly ask for a copy of the results and post them for comment. You find you do not take in information in the hospital when you do not know what questions to ask. I was feeling that my GP referred me purely from the initial blood results and I was worried that when I got my hospital appointment the consultant would have said that actually there is nothing wrong with you and that the GP was just being over cautious.

  • You're right that we don't take information in. In the first place it might be we've just heard the word 'hypothyroidism' and would like some information of the purpose of the 'thyroid gland' and how best we can recover our health. Unfortunately, the speicialists seem to know less than most on this forum and our individual personal experience can be more helpful.

    The fact that the guidelines state not to diagnose until the TSH reaches 10 although some do prescribe if it is over 5. Some doctors also persevere to keep the TSH in range - even the top of the range - and stop increasing dose and ignore clinical symptoms.

  • It would be nice to be told by consultants what foods to eat/not to eat or things to do/not to do which could possibly assist balancing levels quicker/more naturally

  • I've just been diagnosed over active,and have been losing weight over 18 months! I too am confused and a little scared! Can't see the endo till end of January!! Doctors put me on 20mg of carbimazol.so I will be following your posts to see what advise is given.

  • I think we are in the same boat. To be fair, my GP referred me quickly but I do not feel ill, just permanently tired, which is why I feel as if nothing this drastic is wrong with me. Still dazed and confused with so many questions. The pharmacist says that I only had to pay for the first prescription and that I could get an exemption certificate as I may have to take tablets for life which I don't like.

  • I'm lucky as I live in England,so my meds are free! Hope we get some helpful advice! I too am down to 8stone and look dreadful!! I'm 5' 2" and was 11 stone 6 pounds although over weight,I looked healthy ha ha!

  • I think as soon as you are stabilised and on a dose that suits you will most probably feel much better. :)

  • I am hoping so, but I don't like the idea of taking tablets long term/forever. If I have a cold, I never take any over the counter remedies, instead I just take fresh lemon, a spoon of honey and paracetamol.

  • If you're hypothyroid, don't think of taking 'tablets' we are taking life-giving hormones. A big difference although we'd prefer not to :)

  • ---this idea, way of thinking I found helpful too :) (my dr actually introduced it to me, whaddaya know)

  • Know what you feel about looking dreadful, I am about 5ft 4" and feel that if I loose any more there won't be anything left!

  • Even luckier if you live in the UK but not England. Then you don't have to go through the Medex process at all to get "free" prescriptions.

  • Read up here:

    nhsbsa.nhs.uk/1638.aspx

    And on the other pages linked to from there.

    Did your pharmacist offer you a FP57 receipt - which would have allowed you to claim back that first prescription fee?

    The eligibility is not because you have to take them for life, it is simply that hypothyroidism needing hormone treatment was determined to be one of the criteria. There are plenty of medicines people need to take life-long which do not qualify them for a Medex!

  • No, He said I had to pay for the first month and mentioned when I get the repeat prescription to request an exemption certificate, which I will do. I still find it strange that this condition qualifies you for free prescriptions whereas diabetics have to pay for their meds/needles and I would have thought that their condition was more life threatening.

  • That is very poor of him. You cannot get one after the event. So his inability to correctly identify the process has cost you.

  • Typical, being ill costs. I thought I was going to pass out at the cost of the carpark at the hospital. You cannot risk parking on the 1 hour free parking as you never know how long you are going to be.

  • I park 20 mins walk away at the shops and walk to the hospital. Oddly enough,the one in the next town where I went for the SIBO test doesn't restrict parking in nearby streets like ours does.

  • Untreated hypothyroidism absolutely is life-threatening.

    In the extreme, and in the "olden times", it was suggested twelve year between starting to go down hill and dying. The state of myxoedema coma is still a killer. The extract below was published in October 2016 (no, not 1916 or 1816!):

    Myxedema coma is a rare endocrine emergency due to the advent of rapid TSH ELISA testing but has been reported to occur with an incidence of 220,000 per year in western countries [9]. The mortality rate is reported to be 60%. It typically presents as a state of severe hypothyroidism with cold intolerance, hypothermia, hypoventilation, hypercapnia, bradycardia, and cardiomegaly.

    ncbi.nlm.nih.gov/pmc/articl...

  • I wonder if I have had thyroid problems for years already without knowing. I have never been able to 'sit still' or relax and what with the unexplained weight loss and having the initial tests coming back as overactive it seemed to fit, which is why I am surprised and confused when endo did further bloods only a few weeks later and it is now underactive. When I can get the blood numbers from the GP/consultant I will post them as they mean nothing to me, but somebody may be able to tell me how severe, or not they are.

  • I suspect few, other than newborns who are detected shortly after birth, ever get diagnosed early in their disorder - whichever particular version they have.

    Have frequently said that the word "insidious" could have been invented for hypothyroidism, but perhaps that would apply just as well to hyperthyroidism?

  • You can also put up a new post (if you've not done so already) asking advice of those members who are/have been overactive.

  • I post the numbers which relate to the 3 blood tests which I have had done, once I can get the information from the GP/consultant

  • Get used to asking for copies of all your blood test results for you own records (with the ranges) and when necessary you can post if you have a query. :)

  • What might help to convince your doctors that you are losing weight is to log everything you eat for a couple of days, possibly even on a scale in grams, including all condiments, cooking oil etc. Use correct calorie entries. The more precise you are the more your doctors might be willing to believe you and to run further tests.

    I had a period of massive weightloss in the past. Doctor just kept on telling me I was fine and my weight was fine. Showing how much I was eating convinced them to further look into things. In my case it was pernicious anaemia (yes, I had neurological symptoms, but doctors also ignored those). Once on shots the weight loss slowed down, and finally stopped.

  • Many thanks for this suggestion, I will start to do this. One blood test a few years ago came back very low iron levels and I was tested for pernicious anaemia, but the second test my iron levels were back to normal.

  • Pernicious anaemia isn't the same as iron deficiency anaemia - it is related to an inability to make/use B12 in the gut.

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