Newly diagnosed and frustrated Hypo: Hi all, I... - Thyroid UK

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Newly diagnosed and frustrated Hypo

HypoSpark profile image
9 Replies

Hi all, I have been recently diagnosed as subclinical hypothyroid. Some quick facts. I'm a 48 yr old female, currently weigh 225 up from 190 ,walk about 20-25 miles per week (5 miles each time) And also I follow a whole foods plant based diet, and have recently cut back on soy and gluten.

On July 18th of this year My TSH was 7.690, I was started on 25mcg of levothyroxine. My first few doses I noticed loosing a lot of water weight, i would get up to go to the bathroom 3x a night for about 5 days, then i noticed my nails improving, my plantar fasciitis went away and a fungal infection i had on my toe was healing, and even my eyesight improved. I thought wow this is great, but yet my weight was not changing and my energy level and brain fog was still there. I call the Dr. and was told to give it time, so i did... was feeling ok at about 6 weeks.. people was telling me i looked better and "did i loose weight?" and i felt ok..even felt like my pants was getting looser, but I didn't want to weight myself just yet... i wanted to wait till after my period and diet and exercise a little better. So today I stepped on the scale feeling confident and was totally in shock. My weight was the same!! No change! I am so frustrated! I go back in Oct for more blood work and I'm praying that because i had some positive effects from Levo that a increase in dosage will help with my weight. Could this be the case, I'm just not on enough medication? Thank in advance for any advice.

I'm also noticing strong smelling urine, and i drink a lot of water, is this normal and part of thyroid disease?

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Heloise profile image
Heloise

Hi Hypo, good to see that your Levo is working for you. Your TSH is very high and with your weight so high, it seems you have been having metabolism problems for some time.

Low metabolism means you are not burning calories as quickly as others. Your body needs thyroid hormone to raise your metabolism and your temperature. You are on a tiny amount of T4 or levothyroxine.

We don't know how much hormone your thyroid would produce but it could be as much as 200 mcgs. of T4, T3 T2, T1 and calcitonin. You are on T4 only and hopefully your body will make the rest. You definitely need to increase and may end up taking 125 mcgs. but it depends on whether your TSH is coming down and ideally around 1. You have a ways to go.

It's wonderful that you are able to walk and it's good for many reasons but you have to be careful, you could slow your metabolism further with too much exercise. Be sure to eat enough so your body doesn't feel you are starving. That is also counterproductive. Your weight gain is hormonal so that's what you need to work on.

Heloise profile image
Heloise

Here is some explanation of what is happening. health.howstuffworks.com/hu...

m7-cola profile image
m7-cola in reply to Heloise

Thank you for circulating this extremely clear and helpful reference.

Heloise profile image
Heloise in reply to m7-cola

Thank you, I also like Dr. Kaslow's insights if you are interested. drkaslow.com/html/thyroid.html

DuchessOfCatford profile image
DuchessOfCatford in reply to Heloise

That was so helpful to me too. Thank you.

Heloise profile image
Heloise in reply to DuchessOfCatford

I hope you continue to learn, Duchess. It turns out that even the professionals have to be detectives because it's really a complicated condition that affects almost every part of your body. This means that symptoms can be all over and confusing. Still, most conditions come about through your gut. The first thing I learned was that the inside of your gut is still outside the body but with leaky gut, it gets inside your body which means your bloodstream. Troubles can begin but a lot of it is now understood so hopefully you will find your way.

m7-cola profile image
m7-cola

Sorry you are having such a difficult time. I agree with others that you are still at the start of your thyroid medication ‘journey’. Warmest wishes.

SlowDragon profile image
SlowDragonAdministrator

25mcg is only half the standard starter dose. So it's likely you need 25mcg increase in dose after next blood test

Dose is increased slowly,in 25mcg steps. Retesting after 6-8 weeks until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

greygoose profile image
greygoose

Unfortunately, as often happens, your doctor started you on too low a dose. The normal starter dose is 50 mcg. I don't know why they do this - basic lack of knowledge of treating thyroid, I suppose. Also, he's leaving you on that dose for too long. The protocol is that you should be retested after six weeks, and your dose increased by 25 mcg. And this process should be repeated until your symptoms have gone. But, doctors don't seem to understand that. So, you're going to have to guide him, and not let him fob you off.

Anyway, when you go for your next test, make sure that you have the blood drawn early in the morning - at least before 9 am - and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. I don't suppose your doctor will tell you that, because they just don't know. And they don't need to know, either! It's a patient to patient tip to make sure you get the highest TSH and the lowest FT4, to ensure an increase in dose - because they will refuse that increase on the slightest excuse! We have to look after ourselves. :)

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