Newbie meds/diet: Hello Im new to this site and... - Thyroid UK

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Newbie meds/diet

Pinky3 profile image
9 Replies

Hello

Im new to this site and in need of some advise, excuse the long explanation.

I was diagnosed with hypothyroidism June 2015 with symptoms as long as my arm, and apparently my readings were off the chart (I do not have my readings but I will try to obtain these) my symptoms were boarder line embarrassing having so many I felt like I was making them up! My swollen face, unable to walk up the stairs as my legs felt like lead, sleeping in the day, foggy memory, depression, mood swings, dry skin, ringing in the ears and the list goes on. The doctor started me on 100mcg levo but after 1month was increased to 150! Almost two months ago I received a call to say I was now hyperthyroid and to lower the does to 125mcg. I still have symptoms of depression, ears ringing, achy joints, very stiff ankles, exercise is still much harder (I'm a personal trainer so exercise is part of my daily life) and I feel tired most of the day, and I can't sleep as night. even when my blood levels are apparently fine I still don't feel like me, am I entitled to see an endo specialist? I live in the uk.

It would just be nice to cope with the daily chores I have and not get so stressed at silly things. I should also mention I have a 6 year old who is currently being tested for adhd and a 1year old so I need to be 'normal' for them. I also recently started a high fat low carb diet plan to shift the extra weight that seemed to just be there one day! Is this diet ok when you have hypothyroidism? I eat 20g carbs a day.

Lastly living in the uk are there any other options for medication as the more I read about t3 & t4, the more confused I feel about the whole subject and the doctor just fobbed me off with only if you are complicated can you take other medication?

Any advise would be greatly appreciated :)

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9 Replies
ClareP81 profile image
ClareP81

Lojosmelia_83 Welcome, i too am a newbie, very similar to yourself. I was put on 100mg of Levo. Had my results yesterday and apparently they are now in normal range. My symptoms too are as long as my arm still. But as i am know longer classed as a red flag doctor just tells me to be patient with my symptoms. I have been told on here that there is a delay with meds and symptoms dispelling. Fingers crossed they get a move on. Totally sick of feeling Ill, just want my life back xx

Pinky3 profile image
Pinky3 in reply to ClareP81

Here's hoping, it's just frustrating never knowing if you're on the right amount as the wait for tests and meds to start working is such a long journey and even then you still wonder if symptoms are related to the thyroid or something else! I'm getting married in June so I'm trying to get back to the old me if that's ever possible? Reassuring to know others feel the same xx

Clutter profile image
Clutter

Welcome to the forum, Lojosmelia_83.

Symptoms can lag behind good biochemistry by several months. If you post your thyroid results with ranges (figure in brackets after results) in a new question member will be able to advise whether you are optimally medicated.

Hypothyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Ask your GP to test and post the results and ranges in a new question for advice.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Pinky3 profile image
Pinky3 in reply to Clutter

Thank you clutter, I will ask for a printout at my appointment next week and post in a new post. My vitamin d has been tested and my doctor said it was very good so I can rule that out. Thanks again, Lou

Clutter profile image
Clutter in reply to Pinky3

Lojosmelia_83, 'good' is an opinion. Ask for your vitD result.

greygoose profile image
greygoose

Well, not sure your doctor knows anything about thyroid! Starting someone on 100 is a bit much - usual starting dose is 50 - but to then go on to increase by 50 after one month... Not really surprised you became 'hyperthyroid' (over-dosed).

Normally, one is tested every 6 to 8 weeks, and the dose increased by just 25 mcg. So, now he's put you back down to 125, you are more or less where you should be after starting in June - if you see what I mean. But, by no means, has your body had time to process, absorb and convert, and absorb again between changes in dose. So, you probably have a lot of catching up to do. You now need to stay on that dose for at least 6 weeks for your body to sort itself out before getting tested again.

However, as Clutter mentions, your body won't be able to do anything with that hormone you're giving it, if you have nutritional deficiencies. So, best to test the things she mentions. Also, deficiencies will cause their own symptoms, making you feel even worse. So, if you get all that tested, and post the results here, we'll be able to set you on the right road for supplementing. :)

As for your diet, it all dépends on the individual. Eat what makes you feel well - but Don't cut calories or carbs too drastically. The most important thing is to stay away from all forms of unfermented soy, because that will make you more hypo.

As will exercising, I'm sorry to say. Exercising uses up your T3 (and your calories) and if you haven't got enough to start with - which you probably haven't, then it's going to make you even more hypo, and put on even more weight.

If your extra weight just 'seemed to be there one day', and I know what that's like, then it's nothing to do with what you eat. Nothing to do with calories in vs calories out! Nothing to do with calories. So, it's doubtful that cutting calories or using them up is going to help you lose it. What you need to lose it, is optimal T3. But, I doubt you have that yet.

In the UK, doctors are taught that Levo (T4) only treatment is all that is needed. This is often not true. But, it's very difficult to get NDT - because they Don't understand it - or T3 - because it's too expensive and they Don't understand it - prescribed. A lot of us on here buy our own, on-line.

The most important thing to remember is that your doctor probably knows nothing whatsoever about thyroid - evidenced by his dosing Schedule! - so you have to learn as much as you possible can about your disease. :)

Pinky3 profile image
Pinky3 in reply to greygoose

Hi Greygoose, thank you for your response, I was able to get a print out of my last results which were taken on the 10 dec 2015:

Free T4 19.3

TSH 0.05

Free T3 4.9

Ferritin 27

Vit B12 249

Vit D 85

My next doctors appointment is on the 5th Feb, and I have a list of symptoms to discuss. I'm hopeful that she will be able to either refer me to an endo or tell me why I still feel this way and adjust my meds accordingly, that if they even need adjusting? Currently I am still on 125mcg Levo. I have no idea how my numbers should be and whether taking t3 like I've read would help, or if i even need it?

Im finding my job as a personal trainer is being affected, as Im not as quick thinking or sharp as I used to be. In terms of diet I'm basically eating a really healthy diet with the occasionally red wine at the weekends, and I do short HIIT sessions to keep my fitness levels up 6 days a week and 3 yoga sessions. I do experience very tight muscles after training, even with deep stretching, foam work and mobility, is there anything that can help with taking armour? I do take magnesium also. It also seems my weight goes on very easily, I look and feel puffy/swollen, considering I have quite a bit of muscle mass the fat just sits on top and won't shift, so not sure if this is related to my medications or that Im secretly eating in my sleep! Can anyone recommend a good book about hypothyroid which covers, diet, exercise, meds etc? Any advise would be greatly appreciated :)

greygoose profile image
greygoose in reply to Pinky3

It probably isn't fat. It's more than likely a nasty gooey mess called 'mucin' that we Lucky hypos get! It's just Under the skin and holds water so that we look puffy and swollen. It has nothing to do with what we eat or how much we exercise. And the only way to lessen it (not sure you can ever completely get rid of it) is to optimise your T3

You Don't give any ranges with your Frees, there - the ranges are very important - but, even so, it looks to me like your FT3 is somewhat low, and that you're not converting very well. So, yes, some T3 would probably help you a lot- whereas, just increasing the T4 might not help.

With low T3, you're bound to have problems with your brain - thinking less sharp, the brain is the largest consumer of T3 - and your muscles. But impossible to say whether NDT or synthetic T3 would be best for you. But, you stand more chance of getting T3 prescribed than NDT, so best to go for that, first. Or, you could look into buying your own on-line (not on body-building sites! lol)

Your ferritin and B12 are much, much too low. That will affect how your body absorbs and uses the hormone you are giving it. I Don't know much about iron, but it should be at least mid-range to 100.

1000 is optimal for B12. Anything Under 500 puts you at risk of permenant neurological damage. However, doctors do not recognise this risk. If i were you, I would supplement with 5000 mcg sublingual methylcobalamin nuggets (you can find them on Amazon) daily, plus a B complex, because the Bs all work together. You might find that a lot of your symptoms are due to that low B12, because that can affect the brain, the muscles, etc just as much as low T3.

Pinky3 profile image
Pinky3

Excellent, thank you, thats great advice, I will look into these supplements and hopefully be back to the quick thinking old me! Sorry the ranges for my results:

Free T4 19.3 (9-22.7)

TSH 0.05 (0.35-5.5)

Free T3 4.9 (3.5-6.5)

Ferritin 27 (10-291)

Vit B12 249(211-911)

Vit D 85 (>75)

Would you suggest using an oral spray bit B and D (betteryou), I have used these in the past but had conflicting opinions on whether they work or not? I had injections monthly a year ago as my b12 was on the low side and apparently not being absorbed even with increased intake, perhaps i need injections again?

What is this Mucin and why do we have this? This sounds lovely! Would love to find a way to get rid of it as all my hard work to create shape will always be hidden by the sounds of it!

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