more info about my condition

Thanks to everyone who replied to my first blog re. rececently being prescribed carbimozole and the potential for weight gain.

I did not give enough information in the blog and will now give more.

I was diagnosed with a multinodular goitre and subclinical hyperthyroidism and a constant racing pulse on the 22/12/2012. My T.H.S. levels have been steadily getting lower for at least 7 yrs but T3+4 have been within normal levels.

I was referred to endrocrinologist just over a year ago. I had to insist that my GP refer me. I've since discovered that symptoms I've been suffering with for 15 years are in fact caused by the thyroid condition.

Until this prescription for carbimozole I have not had any medication. I have not yet got the meds and am unsure as to whether or not I will take them. I now realize I need to understand a lot more about this condition and find out what my options are.

I'm going to look into alternative and natural treatment programmes. I find the whole subject very complex as I'm sure most non medical people do at first. For the first time since my thyroid problem came to light, I started to feel really unwell 2 months ago with shaking arms and legs, extreme fatigue, blinding headaches, shakiness and feeling faint. Have also noticed indigestion (which I've never had before).

For those who said my prituarty gland needs checking, is this the case with a multinod. goiter diagnosis (goiter was found by ultrasound)?

I have never been on a forum until very recently and am not quick at respoding but thank you for all the support.

Angi x

6 Replies

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  • Hi Angi

    I have to ask about the photo you posted in your previous blog - is that you with your lovely dog? If so, you look hyperthyroid and perhaps it is a trick of the light but you actually look slim not overweight. Have I got this right?

    By all means it is good to explore all the options but having suffered from a thyroid storm through undiagnosed Graves disease, I can tell you first hand that hyperthyroidism is not something to ignore for any length of time. I very nearly popped my clogs. However as you are subclinical, I suspect the plan is to treat you with carbimozole for a short period of time and then re-evaluate. These links might help you with your options:

    aafp.org/afp/2002/0201/p431...

    eje-online.org/content/152/...

  • A multinodular goitre makes the pituitary irrelevant in your case. What happens is that the nodules are producing thyroxine without any prompting from TSH so when the Pituitary detects high levels of thyroxine in the blood and stops the TSH production to tell the thyroid to stop Thyroxine production, then the nodules completely ignore this and just keep on producing, leading to your 'overactive thyroid' symptoms.

    If this condition is allowed to continue, your heart will come under strain and possibly even fail. It is a condition which can be treated with Carbimazole with varying success, but whatever treatment is finally decided upon (and it has to be treated) it may well result in a temporary weight gain. The alternative, however, is not to be contemplated. I had multinodular thyroid at 30 years of age and it was misdiagnosed for 7 years because I had had a partial thyroidectomy at 18 and my doctor refused to admit it could be my thyroid causing symptoms until I went into Thyroid Storm. As a result I nearly lost my life and have heart valve damage.

    I was slim and loved being so, but uncontrolled overactive thyroid does not bear thinking about. I did lose the weight I had gained initially, with exercise and diet, and for a long time I did not have to worry unduly about my weight even though eventually at age 37 I had to have a total thyroidectomy and thyroxine treatment.

    I am not trying to scare you and neither is #editfmrt but we are trying to impress upon you that you surely would not want to avoid a possible weight gain at the risk of your life. If the doctor considers you need carbimazole he has good reason, 15 years to be suffering symptoms is a long time.

    You will find lots of information and 'natural' treatments for underactive thyroid but I struggle to find any alternative treatments for thyroid nodules, I don't know if anyone on this forum has found anything , but I do assure you that this is a condition not to be messed with.

    Believe me, you have my complete understanding and fellow feeling, your whole mind and body are under terrible strain because of the illness, it's the worst time in the world to have to make big decisions. I'm going to see what I can find, however time is important so don't wait too long.

    Marie XX

  • Marie - I wrote something very similar to you but very annoyingly lost it all when pressing submit. I didn't have the energy to re-write it so condensed as above just to make sure some of my message got across.

    I hope Anji takes on board what you have said because it is so true and important she does not neglect this on the basis she is worried about putting on weight. Like you, a thyroid storm almost cost me my life at aged 30, so I feel very passionate and concerned about anyone contemplating no treatment.

  • I forgot to ask if the nodules are 'hot' or 'cold'? that will make a big difference to any treatment options.

  • My recommendation would be to start the Carbi and get the thyroid bloods within range....you can then look at complementary alternatives to see which would work for you.

    Definitely...if this is a new diagnosis, then have as many tests as your Endo will give you. Antibody tests will give a better picture. Testing the pituitary will check the TRH levels which again can give a bigger picture. As is so often diuscussed here, thyroid issues put the body under stress which can cause problems for the adrenals in particular.

    I can only stress it is very important to get the thyroid to slow down and it may be that the Carbi is going to be the very best option. I would say it is worth seeing if the meds suit you.

    Being hyper is absolutely no fun and very serious.

    My own story....diagnosed with enlarged multi-noduled goitre with isolated T3 toxicosis, suppressed TSH - for decades! I did very well with supplements and the Chinese herbs GreenLife (google ThyroidThru/GreenLife) which helped reduce the goitre. I was on no clinical meds. After years of trauma/stress - I flipped hyper in March and boy did it just 'go'. I dropped 14 kilos in a matter of a few weeks. Mis-diagnosis did not help - even though I had been monitored every 6 months. It took a series of debilitating panic attacks to have me at the surgery asking what's happening.

    I am now stabilised and looking to return to herbal treatments. Looking back over the past months I can honestly say....I am very fortunate to be here.

    Sites you might like to look at.

    ccjm.org/content/77/11/... This gives different explanations for blood results (especially TSH readings).

    Dr Eric Osansky was diagnosed with Graves and successfully treated himself with herbals. Bugleweed/Motherwort/Lemon Balm - are the three that can help. I can only recommend that you work with a qualified herbalist who understands about hyperthyroidism.

    Elaine Moores has a very helpful site for hyperthyroidism and you can post questions.

    Currently I am working with a physio and having hydrotherapy to re-build muscle wastage....which will take months.

    I am also working with a Chinese doctor and Dr Peatfield. (Sadly my situation was complicated because a large gallstone was discovered - so it is not a simple question of just being able to eat to regain the weight!) My Endo does not advocate gb surgery for the time being. There is always the possibility that I will 'have to have' RAI/surgery. I hope not.

    Please think very carefully about not taking the meds....the symptoms you describe could also be adrenal problems....if your thyroid bloods are ok?

    I cannot stress enough....when the body goes into hyper state and the metabolism runs - the new patterning takes hold in the body.....it then takes time to get the body back into balance.....with perhaps some very serious problems, particularly the heart, taking hold.

    Do take care and post any further questions for support/advice.

    xCarole

  • Hi I concur with the above lovely people.

    You must take cabimazole if prescribed. It is not a case of being able to just treat it with natural remedies.

    Unlike being hypthyroid where many alternative treatments can help and in some cases really help, when hyper there is no choice. There are two antithyroid drugs currently being used and that is it.

    If you dont take the meds then you will continue to worsen and as above you may suffer a thyroid storm. I am not trying to frighten or upset you but that is the reality. I know you may not want to face this right now but please rethink your choices. What is a little extra body weight compared to heart failure or damage?

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