Someone help me, docs tomorrow

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Ok so bit of back ground first.

I am 32 and have suffered from an under active thyroid for 2 years and they have been unable to stablise me and I am currently on 300mcg levothyroxine. I was referred over to endo but they cancelled and I am back on waiting list for appointment at end of April now.

Basically in 2 years I have gained a load of weight , I am 5 ft 6 and I weigh 16 stone 11lbs and it upsets me immensely. Doc put me on orlistat and my daily food routine is along lines of breakfast biscuits, soup for lunch and chicken, salad and rice of small amount of potato. I sometimes have fruit as snacks and I drink no added sugar squash. I won a years free membership to gym but it is so hard to go as I weigh a lot and I suffer slipped discs which doc said my weight isn't helping but I can't seem to lose the weight. I am on anti depressants as this is really getting to me. I am seeing doctor tomorrow and will be telling him all this but I wanted to see if anyone can give me any advice as what I should present to doc.

I am 32 if I run up a flight of stairs or walk fast I get

Out of breath and my chest hurts. I have a 12 year

Old daughter and I am petrified of leaving her if something happens to me.

I am so depressed as this has been going on for

2 years.

I remember being top end 14 stone and now I am nearly 17 and so upset. Will someone help me . Tia xx

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17 Replies

  • Posted

    Hi

    looks like the same symptoms all us levothyroxine takers suffer from welcome to our world lol

    People who know a lot more that me will be able to advise you on blood results and vits.

    I advise you to look at the discussion on this site which looks at the side effects of levothyroxine this might help.

    keep sane smile

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  • Posted

    300mg seems like a collosal dose. Do you know what the cause of your hypothyroidism is? (eg hashimotos etc.)

    It may be that you don't convert t4 hormone (which is what levothyroxine is) into T3 (which we also need). Have you tried levothyroxine alongside liothyonine? This is a t3 drug which is available on the NHS but some GPs are reluctant to prescribe as it is considered expensive compared to levothyroxine.

    Also might be worth having your cortisol tested as it can affect your conversion of T4 to t3 if it is too high.

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  • Posted

    Hello Kelli:

    My name  is Shelly and  I am a nurse in the USA.  I also have Hashimoto thyroid disease since 1987.

    Sorry to hear what is going on with you.  That dosage of Levo is very high and many of us can't take Levo. the heart can be bothered by too high a dose and it can cause a fast heart rate.

    I myself, had to switch off of it years ago. I am 54 and when I was diagnosed in 1987 I was on Levo.  I took it and never had good TSH or T4 levels. It did nothing for me!!!

    Today  I am on Liothyronine T3 only.  My TSH is normal and I feel the best I ever felt. Levo has to convert in the thyroid to useable T3 hormone.  If the thyroid can't do it the body will not have enough T3 for energy.

    The thyroid makes 4 hormones but for this conversation we will talk about           T4 -thyroxine and T3-Liothyronine.  There seems to be a problem in some of us and T4 justs sits in the body,  but does not convert into T3.  It can be from a damaged thyroid.

    Thyroid disease can come from a family trait and also from a virus called Epstein-Barr also known as Mono.  It can damge the gland badly.  Also it can come from a lack of iodine in the diet. It can also happen from stress on the gland and after pregnancy.

    You need blood work to include a T4 level, T3 level, TSH, and a TPOA antibodies test.  Also a mineral panel. Sometimes Levo will not work if Ferritin is low.  So you need a panel to include, Ferritin, Poatssium, magnesium, calcium, sodium, iron, Vit D and B-12.  Ask for these tests.  All of this is blood work!  It is very important to do all of these.

    Levo must be atken on an empty stomach and you must wait an hour before eating.  Food will block the medication.

    There are other meds, such as Liothyronine, Liotrix (T3 & T4 combo med), NDT (natural thyroid), such as Armour Thyroid, Thyroid S, Thyroid W.

    NHS, has a narrow formulary and some weird policies and rules and since NDT comes from a pig's gland it can not be on a patent and licensed. NHS will not prescibe it.  So you can get it off the internet and many on here do that.

    Please keep us posted, if you have any questions, just ask.

    Shelly

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  • Posted

    I know how you feel. I've been suffering for 19 years now. I was diagnosed with a goiter years ago. The doctor didn't treat it other a scan and biopsy, they did nothing for me as my TSH, T3 and T4 were all normal. I was on antidepressants and anxiety medicines. I hear you with the weight gain, I refused to be weighted my last visit. I've seen a nutritionist and was cleared to take Alli, but after they took it off the market for awhile; I wasn't interested in it once they brought it back. Few weeks ago, I'm increased 50mcg levo. Too soon to see a marked improvement. Stay firm with your doctors submit articles and communicate
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  • Posted

    The usual dose of levothyroxine is 1.7mcg multiplied by body weight in kilograms. If you do this calculation how does the answer compare with what you're taking?
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    • Posted

      I would discuss this with your doctor. Are you getting any hyperthyroid symptoms? If so tell your doctor. But also bear in mind that you were (presumably) put up to this dose because you were getting hypothyroid symptoms which suggests something else is going wrong in the thyroid process.

      If you are still getting HYPO symptons despite being on this high dose it also suggests something else is going wrong in the thyroid process. For example, not converting T4 (levothyroxine) to T3 (liothyronine) that your body needs. Ask him to maje your appointment to the endo urgent. You've suffered long enough.

      Re diet, try eating fewer carbohydrates and more protein (e.g. chicken) and vegetables. Porridge made with skimmed milk in the morning is good for you (try to get used to it without sugar etc), is filling and is low in calories. Trouble is, being wrongly medicated for a thyroid problem leads you to put weight on, yet leaves you ravenously hungry and craving carbohydrates.

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    • Posted

      These are my symptoms and they are affecting my life style.

      Up about 3 times a night for a wee,

      Always tired and no energy

      By 230 in afternoon I need to sleep otherwise I get grouchy.

      Hair falling out

      Weight gain

      Always hungry

      Depression

      Achey

      Heart racing

      I think this is to name a few. I get so upset as well as I'm scared

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    • Posted

      Oh and I don't know if this has anything to do with it but I have constant ear problems, I feel

      It's like watery ear and it's itchy, when I put fingers there to itch it's wet.

      Don't know if that's a sign as well x

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    • Posted

      Hair falling out and racing heart are both signs that you are taking too much (and it really sounds to me in my personal opinion that you probably are). I had hair loss and racing heart that kept me awake at night but as exhausted it was hard to function and my endo said I was overreplaced. It's possible to have a combo of both hyper and hypo and be on too much medication. It may just mean that this particular medication isn't right for you (some people just don't feel good on levothyroxine). I would recommend exploring other potential avenues for medication .
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    • Posted

      The tiredness may also be worse due to you having to get up in the night so often. If your sleep is continuously broken, then you may not be getting enough deep sleep for your body to function daily. I have similar issues with frequently needing the loo at night but not sure why
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    • Posted

      Tbh this is just really getting to me. I have docs at 310 and I feel like I'm gonna burst into tears. My biggest concern at mi is my raving heart and my weight gain. I actually wanna see my daughter grow up and do stuff with her xx
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    • Posted

      Tbh that was a waste of time. All he's done is increased by levo. He said tsh is 1.9 and ts4 is 13 so why am I still getting all these symptoms. He said he's gonna put urgent mark on my endo referral. He said can't prescribe liothyronine and that's only done with endo. This weight has got to go as its affecting my health and my back as well. It hurts so much x
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    • Posted

      Sorry to hear they weren't that helpful but hopefully you will get to be seen quicker and glad thry can see its urgent. It's down to the discretion of the Gp to prescribe it but I have been told by certaib doctors that they will only prescribe liothyonine on the instruction of an endo. Fingers crossed they will let you try it and may give your metabolism etc the kick start it needs? Keep your chin up its such a long gruelling process sometimes but you will get there
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    • Posted

      I know you think that was a waste of time, but actually I think you got what you most needed: the urgent referral to an endo. It's out of your doctor's remit to prescribe liothyronine (T3) or natural desiccated thyroid (NDT). My GP prescribed me liothyronine in 2013 but was no longer allowed to do so last year.
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