Anyone here Hashi's and morbid obese?

I am talking about in the twenty odd stones category.

I have been large but fit all my life. Used to be a dancer. But around 7 years ago after stopping smoking I ballooned. Granted I had become a full time carer for my mum, but I got bad. My legs started to swell about 5 years ago and I have lumpy oedema on my legs below the knee. I have trouble with my left foot too. Seems at this time my past blood tests show I was subclinical for Hypo at this time and symptomatic.

I was almost crippled 80% of the time before starting Levo. Now the foot and leg pain is less but not gone. I can walk on it with no pain most days but then one day I over do it and theen I am in terrible pain unable to walk.

I just got back my antibody test which shows Hashi's at 390.9 which is 10 times the top range level. I know I am under medicated as I am still very tired.

I am not losing weight as it just won't go. Has anyone else had similar whilst under medicated?

I am still finding my way with all this. I am very deficient in vitamin D and my leg pain has improved with taking 6000iu per day. I also taken vit B12 but careful about iron. Iron and folates are low but in range.

I just don't seem to know anyone my size like this. Most people are overweight in their eyes but not in mine. Several people keep telling me when the meds become optimum I should start to lose quite a bit of weight.

Most people my size stay bed bound and don't do half the exercise I do.

13 Replies

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  • Hi I can't give you the answer to how to shift the weight, but I can tell you your not alone I got really big after I quit smoking then hypo. ( Yes i do mean over 20st).

    It really is totally different being this big and hypo. Here's hoping the weight will go if we ever get the med's right.

  • Yes because moving around is never going to be as painfree when large. I suffer more in the heat too. Just quite fed up to be honest.

    I do my best but what with the fatigue Hypo brings, I just collapse with exhaustion most days, even if I have had a good day.

    I so fear I will end up in a wheelchair and that really scares me.

  • ....I think it is important that at your next blood test you must have the FT3 tested. This is the most active hormone and the one that may eventually speed up your metabolism.

    Hashimoto's people often have a problem converting T4 into the ACTIVE hormone T3. I am overweight and have difficulty trying to lose it in spite of quite a lot of activity. I have Hashimotos too. I was diagnosed in 2005 and it became obvious that I was not converting as my FT3 remained at the bottom of the range. It really needs to be near the top and your TSH suppressed. I became T3 only last October and I am convinced I am improving.

    Just as the illness creeps up on you - so the recovery takes time for you to notice.

    Wishing you well and happy soon...........

  • Oops didn't reply properly. Have written a post.

  • Thank you Marz. Unfortunately I have been told categorically that they will not test for fT3 and refuse point blank to to refer me to an Endo. I keep asking.

    Last time the doc said if my antibodies were up my fT3 needed testing but they will not do that. I will need to go to an Endo. I said so if they are up will you refer me and she said she was not allowed and I would have to pay privately. I then said I could in no way afford that she just smiled and said sorry. I asked if I did go private would they refer me and she said no we couldn't do that. Levo is the only treatment you need.

    But hey, I'm poor so I guess I am no use dead or alive in the NHS eyes!

  • Can you contact where your endo are and ask them what is the criteria for referring people to them? I suspect they would be happy to see you and you could get permission that way?

    Totoro x

  • Is it possible for you to talk with a more sympathetic doctor in the practice ?

  • She is the most sympathetic she just isn't allowed to do these things. Rubbish really.

  • ...am sure you have already read on this forum about the book written by Dr Toft - on behalf of the BMA - British Medical Association. It's a small book costing under 5 pounds on Amazon and is also sold in some chemists. Your doctor will have to take notice of his advice due to him being in the same club ! Well worth a try and not too costly. Maybe there is a secondhand one available for pence. Try to do it through Thyroid UK so they receive a small commission....they are a Charity and do so much to help us ALL....

  • I already have a copy Marz but I can't see that it says people with Hashi's need to be tested for fT3 only that if a patient reaches optimal dosing and still is very symptomatic that a specialist should organise for T3 & 4 treatment.

  • Actually it doesn't really say much about Hashi's at all.

  • But you are symptomatic and presumably on optimal medication, so Dr Toft's book will be back up and supplies the reason you need referral to an endocrinologist who can investigate further and can prescribe T3?

  • I was at least 19 stone before on my medication, I didn't weigh myself when I was at my biggest. When I went on medication I lost a lot of puffiness and size fairly quickly. Like it was water weight.

    I started on T4 but now I'm on T3 only and I'm 16 stone. The T3 doesn't make me lose weight but it does make my brain work a lot better and gives me more energy. So now I can do more exercise (walking to begin with and now occasional gym classes). Plus I don't have to eat so much because I'm feeling energy starved.

    Totoro x

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