Thyroid UK
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Hypothyroid crisis!!

Hi. I have been diagnosed with Grave's disease in '99. Received radio active iodine treatment. Thyroid crashed! Complete zero's 6 months later. Went from 79kg - 156kg in 8 mnths. Placed on Eltroxin 0.1 x 2 daily. Weight gain stopped but unable to lose anything. In 2015 meds changed to Euthyrox. Managed to lose some weight with excercise and diet tablets ( First time ever I had some results) My lower right leg started to swell since then, it still does on a daily basis. Weight is adding up again and no amount of excercise or diet is helping. During all these years all thyroid levels have never been in range. If one is in range, other is too low or too high. I have been diagnosed with anemia- iron deficiency ( received IV infusion in Feb, but iron is again too low) and osteoporosis.

Dr's dont know what is cause of leg swelling. And no- one wants to see if anythinh else is wrong with thyroid. I have offered suggestions on Wilson's temperature syndrome, asked for T3 meds only and were laughed at. Dr's suggested I might have depression. Sure as hell I do !!!. Who would not be depressed when you want to get dressed and your clothing don't fit, your legs swell, you have constant pain in your lower legs,knees ans ankles, the scale's finger rises and rises, you are always tired, have a foggy brain, can't study because you can't remember???!!!!

I am going crazy. I have no medical aid, am from South Africa ( which means loooong queue's of people and even longer waiting lists at public hospitals. It takes months before you reach the first dr, then blood tests, then months before you get the results and follow up tests.) By that time almost 3 - 6 months past and more weight has packed securely on your body. I am always amazed at how easily I gain weight. 2kg's per day is nothing new. Losing that 2kg's? At least one month of fasting from 4am - 6 pm and excercising.

Only meds available is Eltroxin and Euthyrox.

Can someone please,please help me??? Please!! I am nearing the 100kg mark again and vowed to never exceed it again! Rather slit my wrists and be done with it. I cant handle this anymore.😢😢😢

9 Replies
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Cammy7182,

Wilson's temperature syndrome is not medically recognised and Denis Wilson was struck off after a patient died following his high T3 protocol.

If you post your recent thyroid results and ranges I can advise whether you are optimally dosed on Euthyrox.

If your iron drops after an infusion you may need to supplement iron daily to maintain levels. Make sure you take iron 4 hours away from Levothyroxine.

Reply

Hi.

Thank you so much for your reply.

Recent results:

5/10/2017:

TSH - 5.5

Range: 0.35 - 5.3

T3 - 2.7 L

Range: 3.5 - 6.5

16/12/2017

Level Range

Iron 5.7 L 9.0 - 30.4

Transferrin

4.13 H 2.5

%Saturation

6 L 15

Ferritin

8 L 15

TSH 0.27 L 0.35 - 5.3

T4 15.5 11.5 - 22.7

I do appreciate your support

Regards

C

Reply

Cammy7182,

TSH 0.27 and FT4 15.5 indicates you are adequately dosed. It's a pity FT3 wasn't tested to check level.

Ferritin and iron indicate iron deficiency anaemia. What treatment is your GP prescribing?

Reply

Hi Clutter

Thanks for the reply. Unfortunately in SA they basically just check TSH and T4 levels.

Dr did not prescribe any meds for iron as the tablets which they normally give, does not go well with my stomach. The reason why I was given iron IV infusion.

They do not know what is the cause of the constant drop in iron levels.

The lower leg swelling is also a mystery.

Regards

C

Reply

Cammy7182,

Unless you supplement iron you are going to require frequent iron infusions. I'm sure you must be able to get iron in South Africa without prescription. Iron bisglycinate is gentle on the stomach. You can probably get it from health food stores or Amazon.

Reply

Do you know if you can buy thyroid meds online and import them into South Africa? Would customs officers confiscate them? Would you be in trouble with the law?

In the UK it is legal to import most prescribed medication - the only exception I know of is controlled drugs like morphine, for example.

I have been diagnosed with Grave's disease in '99. Received radio active iodine treatment. Thyroid crashed! Complete zero's 6 months later.

It sounds as if you were overdosed with the radioactive treatment. People are usually supposed to have some thyroid function left after the treatment.

A healthy thyroid produces T4 and some T3. A healthy body also produces more T3 by converting T4 to T3 within different body tissues e.g. the liver, the gut and other peripheral tissues. Once the thyroid has been killed off it no longer supplies any T3 and you have to rely on your body converting T4 to enough T3 for your needs. Lots of people on this forum can't do this very well.

T3 is the active thyroid hormone that every cell in the body needs. It gets used when digesting food, breathing, your brain needs it to be able to think, your muscles need it when they move.

If you do lots of exercise and use up your T3 then, if you were completely healthy and had a healthy thyroid, your thyroid and body would make more T3. But you don't have unlimited amounts of T4 (which is converted to T3) or T3 itself. So when you do loads of exercise you use up a scarce resource.

You may well be under-medicated - lots of us are. But another point is that if you don't have enough T3 then everything in your body slows down, including your metabolism. So, weird though it sounds, excessive exercise can make hypothyroid people gain weight.

Another issue is dieting. To enable your body to convert T4 to T3 efficiently your body needs food. By dieting you will slow your body down and gain weight.

So, perhaps for a month you could eat a healthy diet, with adequate calories, and cut down on the exercise to just gentle swimming, short walks, a bit of yoga perhaps, and see what happens to your weight and how well you feel.

You should also get hold of your thyroid blood test results (including reference ranges) from the last few years, post them in a new post, and ask for feedback. Also get results (and post them) for any nutrients you've had tested - particularly important are iron, ferritin, iron saturation, also haemoglobin which relies on iron levels, vitamin D, vitamin B12, folate.

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Reply

Hi humanbean 😊

Thank you so much for your reply.

I have no idea if I will be allowed to order prescription drugs from other countries. I do know that they are strict at customs.

Recent results:

5/10/2017:

TSH - 5.5

Range: 0.35 - 5.3

T3 - 2.7 L

Range: 3.5 - 6.5

16/12/2017

Level Range

Iron 5.7 L 9.0 - 30.4

Transferrin

4.13 H 2.5

%Saturation

6 L 15

Ferritin

8 L 15

TSH 0.27 L 0.35 - 5.3

T4 15.5 11.5 - 22.7

I do appreciate your support

Regards

C

Reply

Hi Cammy,

I agree that it can be very frustrating when trying to get a thorough check up performed - and yes, mentioning T3 levels is dismissed, so is mentioning any advice received from the forum. It is also impossible to get B12, foliate etc measured, even at a private lab. They will only test TSH and T4. However, i have found Euthyrox very good over the past couple of years. It is also really inexpensive, and more than one pharmacist has given it to me without a script - when my 6 monthscript has run out and i dont want to pay R500 for a GP consultation simply to get it renewed. So it is fairly easy to get Euthyrox.

Reply

Hi Janine

Thank you for the reply. I agree about the Euthyrox. I am worried about the leg swelling and was wondering if it could be caused by the Euthyrox as I did not have it before, while on Eltroxin.

The fluctuating thyroid levels are a concern. I either gain weight or reach a stop, but no weight loss.

Regards

Cammy

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