How would I know if my levothyroxine dose is co... - Thyroid UK

Thyroid UK

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How would I know if my levothyroxine dose is correct, my feet are so terribly cold as are my hands.

PizzlieBear profile image

My mother and two sisters had hypothyroidism. They have all passed away. Around 29 years ago my doctor put me on 75 micrograms of levothyroxine. I have never seen a specialist or had a referral and my dose has never been changed. Yet he says the dose is one of the things that he has got right. I suffer terribly from the effects of the thyroid problem the most unbearable being the cold feet and hands and my legs burning with cold even when the house is well heated. I cannot sleep well and have to get up when it is too painful I get so irritable. My son says I should ask for a referral to a specialist which I have never had offered. I am frightened of upsetting my doctor who is in his sixties and very kind. I have been a nurse all my life up until the 1980s so am a little fearful of doctors.

I am not sure if my health might be improved if the dose were different. I am told my heart is healthy. Should I continue to have this temperature control problem or is it possible levothyroxine can help with this at the right dose. Do we all suffer this burning cold feet sensation at times?

Thank you all and God bless.

11 Replies
SeasideSusie profile image
SeasideSusieAdministrator

If you are in the UK pop along to your surgery and ask the receptionist for a print out of your test results. We are entitled to them under the Data Protection Act and don't behave to give a reason for asking for them although if you feel the need just say it's for your own records.

Don't accept verbal or hand written results, mistakes can happen, you need a print out. They can charge a nominal amount for paper and ink but they're not allowed to make a profit so something like 50p or £1 would be more than enough.

Then post your results on the forum and we will help. Post them line this

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

And any other results you can get.

75mcg is little more than a starter dose so you are very likely undermedicated.

Do you have annual thyroid blood tests?

In future, always book the very first appointment of the morning, fast overnight (you can have water) and leave off Levo for 24 hours (take after blood test).

Thank you so much I will do as you advise. I will go to get my results which I have never been told before now. I never realised that there was a forum like this until my son explained it to me.

SeasideSusie profile image
SeasideSusieAdministrator in reply to PizzlieBear

The doctor will not offer you your results. They are very god-like and think that patients don't need to know. They usually come out with 'normal' or 'fine' when referring to results but that just means they are somewhere within the range. But it's where in the range your results lie that is important and your GP probably doesn't even know that. They appear to be remarkably ignorant about treating hypothyroidism. But never mind, you have come to right place to help yourself.

By the way, being referred to an endocrinologist is not always a good thing as many members will testify. Most are diabetes specialists and know little about the thyroid and how to treat hypothyroidism. The collective knowledge of members far outweighs what most endos know.

Treepie profile image
Treepie in reply to PizzlieBear

Also read up on Thyroid UK website to learn more about your illness.

I will bare that in mind about the referral to an endocrinologist and spend some time learning from the members here. It will give me courage knowing I am not as alone as I previously thought.

Marz profile image
Marz in reply to PizzlieBear

When you have your results with ranges start a new post so more people see them and can comment 😊

Are you taking any other medication ? Supplements ?

thyroiduk.org

The above link takes you to the main website for this forum where you can read up on all things thyroid. There is a heading on the Menu - About Testing - where you can read about the Private Testing available at home ! Used by 100's and 100's of members as it seems the only way to obtain the correct tests and find wellness.

Sounds as if your T3 is low - and possibly has not been tested by your GP.

Glad you have found us! Talking to others on here helped give me confidence to get things sorted! So welcome to the forum and well done to your son as well!

Have you mentioned to your gp that you can’t sleep due to pain in your legs? It could be something completely different. I think it’s worthwhile paying him/her a visit and mentioning all of your symptoms. Everything.

It may well be that you need more levo, but if the results are coming back within range and you’ve never complained of any problems, then your GP will be unaware anything is up.

I’ve been on the same dose of 100 for many years, but my results show I’m below range. They’ve never tried to lower my dose though. As others have said, being within range may not be good enough, you may need to be low in the range.

Get along to your GP and best of luck!

I have never seen my results but always been told they are normal. I have complained about my legs for years and been given compression stockings but they don’t make my difference as my legs feel like they are in a bucket of ice. It could be unrelated to my thyroid which I have never been given any information about. I did as you suggested and went to the doctors this morning and asked for print outs of past tests. I was told by the receptionist that the doctors permission was required and I should call back after three days. I think that because I am 85 they do not think I should bother about my situation. I have been told by a specialists secretary that I am well past my sell by date to stop me enquiring about a mesh implant problem.

weev profile image
weev in reply to PizzlieBear

That is disgusting behaviour to you. Do you not know anyone who could go with you to give you some support?

This dose seems way too low, as your symptoms suggest. The easiest way to check whether you are undermedicated is to check your pulse and temperature on waking. Your pulse should be around 72 and your temp about 37 degrees C. I suspect yours will be much lower in which case you need to crank it up. It's not just the discomfort of feeling cold, certain physiological chemical processes just can't happen at too low temperatures so your health will be compromised. I highly recommend Dr Peatfield's book 'Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it' to explain everything in more detail. Your doctor appears to have let you down with this. He may be kind but as far as your thyroid is concerned he doesn't seem effective. IMO if he won't refer you or change your dose you need to find someone who will or consider self medicating.

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