Myxoedema: Hi All, Been suffering for quite along... - Thyroid UK

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Myxoedema

19mags66 profile image
5 Replies

Hi All,

Been suffering for quite along while now. Underprice thyroid been on and off. But I knew it was getting worse with the symptoms. Been back yo Docs and asked for T4,T3 test etc. Which only came to light when I told my Boss my symptoms. She gave me a list of the blood tests I needed I.e. T4,T3etc . Now as expected my T4 level is 7.2 and my serum TSH level is 21.9. Can anyone tell me what this means , and what action should I take, is it serious ??? I have just started Levothyroxine 50mg. Advice most appreciated 😀

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19mags66
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helvella profile image
helvellaAdministratorThyroid UK

Number one - you are very lucky to have a boss who understands.

Some very simple things:

Make sure you take your levothyroxine on its own, with a glass of water, and well away from food, drink (other than water), other medicines or supplements. Levothyroxine absorption can be affected by a large number of substances. Worst are things like iron (e.g. ferrous sulphate) and calcium.

Choose when to take your levothyroxine. The doctors and most things that you can read assume you will take it in the morning. However, some of us (like me!) take it at bed-time, or the middle of the night.

Be absolutely strict and religious about taking your levothyroxine every day. Do whatever is necessary to make sure you keep to this.

Read, learn and try to understand. It is very difficult to begin with.

Ensure you always get every test result - including the reference ranges. And keep them safely.

Always get the same make of levothyroxine. Ask your pharmacy to provide the same one. If what you have had dispensed is satisfactory, get that onto your pharmacy notes and refuse any other.

Always check your medicine before you leave the counter - open the bag, check the make, the dose, the expiry dates of all packs. It is fairly easy to get the issue resolved at that stage but possibly very difficult once you have left the counter, let alone the premises.

If there is anything you don't understand or need to know, ask a question.

You will see a lot of abbreviations and acronyms - you might find my document of some help in understanding what they mean:

dropbox.com/s/og3lmxa1dqadb...

helvella profile image
helvellaAdministratorThyroid UK in reply to helvella

Also, you should have another blood test in six weeks. Make sure you DO NOT take levothyroxine in the hours before the blood draw - e.g. if taking in the morning, do not take until after the blood draw, if taking at bed-time, do not take the night before, also delay until after the blood draw the next day.

19mags66 profile image
19mags66

Aww thank you all for the feedback. I am taking levothyroxine about an hour before I get up for work. I must admit I really cannot function without a cuppa on way to work lol.

I've been told off the doctor to have another blood test in 3 month. I am now on my 3rd week of the tablets.

Tired most of the time, but am up at 5.10am for work every morn. Only thing I am really struggling with at the moment is with walking. My right foot is totally unbearable to walk on , hurts like mad. Doctor said it was plantar falitis , i know it isn't . Feels like someone's hit my heel with a sledge hammer. Now going in my left foot. 😭

humanbean profile image
humanbean in reply to 19mags66

Plantar fasciitis is acutely painful and is a common symptom of untreated or under-treated hypothyroidism. Your description of someone having hit your heel with a hammer is a good one. Once your dose of thyroid meds is high enough hopefully your plantar fasciitis will disappear. (Mine did.)

Your doctor is making you wait too long before doing new blood tests. They should be done every 6 weeks. By making you wait longer your doctor is just prolonging the agony.

The dose you've been prescribed is just a starter dose. Unfortunately, the body has to adjust to having more thyroid hormone quite slowly. So you've been started on 50mcg. In 6 weeks you should be tested again. Your doctor will look at your TSH and decide if it is still too high, and if it is then should increase your dose by 25mcg. Then wait another 6 weeks, then test again, get another 25mcg Levo and keep repeating this process until your levels are good and your symptoms are gone.

In hypothyroidism, TSH (produced by the pituitary) is high and Free T4 (produced by the thyroid) is low. Free T3 (produced by the thyroid and also by other organs of the body by converting T4 to T3) is also low.

Doctors usually only care about TSH, rarely test Free T4 and almost never test Free T3. For many patients this works fine, but for some it doesn't.

You might want to read these links :

cks.nice.org.uk/hypothyroid...

cks.nice.org.uk/hypothyroid...

Click on the relevant sections on the left hand side for more information.

19mags66 profile image
19mags66

I noticed that when I went back to ask for other tests. Got told to wait as they were not necessary. I only found out it was myxeodema by looking at the note for medical exemption certificate. I was not told so was quite a blow. Fortunately I have a brill boss and was quite taken aback when asked who wrote myxeodema on top of blood tests. Was not amused when she said that was not good as I shouldn't even be walking. Explains all symptoms I could cry.

However like I said I'm tired and my feet well won't mention again. No weight loss. Swollen lower legs and ankles. Failed to mention that when in work sometimes I feel really weird like I'm going to pass out. Not a good thing in my work environment though.

This live pigs thyroid , armour is it easy to get ?? Just want to be pain free . Can't say normal lol , glad it doesn't affect my sense of humour but very trying at times .

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