A little advice please: Hi all, I was diagnosed... - Thyroid UK

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A little advice please

keach265 profile image
10 Replies

Hi all,

I was diagnosed with hypothyroidism back at the beginning of last year. My TSH level now is 4.62 (the range is 0.30-5.00) and my T4 level is now 11.9 (the range is 12.0-22.0) but I do not feel any different than I did before I went to the doctors, they just keep rechecking my levels and tell me that the levels are fine.

My weight has been all over the place and as embarassed as I am to say this, my weight will go no lower that 107.4kg where as before I was diagnosed I was no higher than 74kg. My weight has been really getting me down and I feel disgusted looked at myself. I have gone to the gym, I have cut out fats and sugars, I have cut down on my meal portions, I have excersized, I have dieted and nothing seems to be working. Does anyone have any tips on how I can lose a bit of weight without having my starve myself. I did go through a phase of starving myself but I have 2 young children and they have noticed that I do not eat, any tips would really be appreciated please.

Thanks x

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lc1973 profile image
lc1973

Hi Keach265.

Do you have the reference ranges for your thyroid test which will help people better answer? If you do; post them with your message (you can edit your post). i am suspecting that you are not taking sufficient thyroid medication which means that all your efforts will be wasted until your medication is optimal. Someone will be along soon i'm sure to better explain the science. Most people on here have or are in the same situation to help you get better. I know how frustrating it is as i have put on 5 1/2 stone and i feel the same as you but its really frustrating when you know or think you are doing the right things, but a starvation diet is not recommended!!! You will also read about making sure certain nutrients/vitamins/minerals are checked as these can prevent thyroid medication from working but i think (and im not medically qualified) that you need to firstly get your results with the reference ranges. then if they are scraping the bottom of the range which i suspect they might be go back to your GP and tell them you are still having low thyroid symptoms and ask for an increase.

keach265 profile image
keach265 in reply to lc1973

I have edited my post and put the ranges on there. I do not understand why the gp's say the levels are ok when clearly I am not but getting listened to by one of my doctors is so difficult. 5 1/2 stone? Oh bless you. I have tried to stop starving myself now and just eat less, more veg etc but it does not work for me, I just keep gaining weight x

lc1973 profile image
lc1973 in reply to keach265

Hi there. You are under medicated and need an increase! Are you still on 50mcg of levothyroxine which is a starting dose or are you on the same as you started with?

keach265 profile image
keach265 in reply to lc1973

Hi :-)

Yes I am still on levothyroxine 50mg, they have never changed my dose even though I have asked them too. They keep telling me that my results are fine on this dose x

shaws profile image
shawsAdministrator

Welcome to our forum,

First of all I am not i the least surprised you feel awful. Most of us would do so if our TSH is nearly 5!!. That is usually towards the upper end of the range although before being diagnosed the Powers that Be have for some unknown reason stated we shouldn't have levothyroxine until it reaches 10. That's really awful when other countries prescribe if the TSH goes to around 3 or above.

First of all keach 265, always get a print-out from the surgery of your blood test results, with the ranges. Ranges are important as labs differ throughout the country and it enables responses from members.

If you email louise.warvill@thyroiduk.org.uk for a copy of the Pulse Online article by Dr Toft who was President of the BTA and question 6 will tell you and your GP how low your TSH can go (it's below 1). Highlight the phrase.

You need an increase in your dose or several, as they should be in increments of 25mcg of levo each time until symptoms go and you feel much better.

This is the procedure for blood tests;-

1. Get the very earliest appointment and don't eat before it but you can drink water.

2. Allow 24 hours between your last dose of levo and the test and take it afterwards.

This allows the TSH to be at its highest as doctors are apt to adjust doses (wrong) to try to keep it in range, when most of us need it low and some need it suppressed. Your doctor (it would seem to me) thinks that once the TSH is 'within range' you are on sufficient - that's very wrong indeed.

Also ask GP to test B12, Vit D, iron, ferritin and folate and thyroid antibodies if you haven't had them done. Get the print-out for your own records and you can post if you have a query. remember they should have the ranges.

A link for info:-

thyroiduk.org.uk/tuk/testin...

The commonest complaint of hypothyroid patients is 'weight grain' whatever they do it cannot be shifted. The reason for this is usually too low a dose of levothyroxine to raise our metabolism. Hypothyroid means our metabolism is so slow that weight is gained as well as feeling awful.

Levothyroxine is T4 - T4 is the inactive hormone and the doses which were prescribed in the past (before blood tests it would have been natural dessicated thyroid hormones we were given) was between 200 and 400mcg of NDT.

T4's job is to convert to T3 (also known as liothyronine) and it is T3 that is needed in all ouf our receptor cells for us to function normally, particularly heart, brain etc. If we are given too little T4 (levo) we therefore have not enough T3 to run our whole body's functions.

We have to read and learn in order to get well. Sometimes that means a change of hormones if an optimum of levo doesn't do the trick.

keach265 profile image
keach265 in reply to shaws

Thank you so much for this information. I will be honest, I do not know much about this condition as I do not know what to believe when the doctor tells me things. I will try my best to get my dosage upped and see if that helps aswell as have a fasting blood test. My ferritin levels are low but the doctor said because my full blood count is fine I do not need any suppliments for it. The rest I will ask for x

lc1973 profile image
lc1973 in reply to keach265

I have low ferritin too keach265. Ferritin is one of the important vitamins which must be optimal for your levothyroxine to work, i take iron tablets on a daily basis to try and improve my thyroid medication uptake.! Sadly doctors dont know too much about the condition and are blinkered by results being "in range" but not optimal...but your T4 result isnt even in range (only just below)! its no wonder you dont feel any different. If your GP isnt very forthcoming i would ask to see another as he or she is not doing you any favours by keeping you unwell.

shaws profile image
shawsAdministrator in reply to keach265

Never take the words 'fine' - 'normal' or 'ok' with regard to thyroid hormone results. Most times it means we are at the top of the TSH when it should be 1 or lower, and bottom of range for T4, T3, or FT4 or FT3 when they should be towards the upper part.

None of us knew very much about the thyroid gland before we were diagnosed (some remain undiagnosed due only to the TSH but have lots of clinical symptoms).

It is a big learning curve but we have to read, learn, and ask questions if we want to regain our health, despite the guidelines.

Always get a print-out with the ranges.

Most feel well when they get to an optimum of levothyroxine and symptoms go. Also it allows your metabolism to be raised and you can diet and lose weight. Unless metabolism is raised it's a waste of time and frustrating. Some lose weight without dieting.

We are usually deficient in all of the vitamins/minerals and it is important they are at a good level. As Ic1973 has pointed out Ferritin should be improved. Doctors don't appear to realise that everything has to work together.

Clutter profile image
Clutter

Keach265,

Your FT4 is below range which is why your TSH is so high. You are undermedicated. Your GP needs to increase dose until TSH is <1.0 and FT4 is in the upper range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP when your request a dose increase.

greygoose profile image
greygoose

Hi keach, well, everyone has told you that you are on too low a dose. And I totally agree! You should be on at least 100 mcg by now. And, obviously, your T3 is too low. It's low T3 that makes us put on weight.

As shaws said, Levo is T4, and T4 has to be converted to T3. BUT it will not be converted to T3 is you Don't eat enough. You need calories for conversion, and starving yourself is just going to make you more hypo and put on more weight. Hypo weight has nothing to do with over-eating.

What you eat is also important. Cutting out sugar is good. But you should be eating more fat, not less. The body needs fat. Good fat, like butter and lard and olive oïl, nuts and avacados. But not seed oils, which are processed. Plenty of protein, plenty of fat, plenty of fresh fruit and veg. Don't drop the carbs too low, the thyroid needs carbs, but not too much fibre, because it stop absorption of your Levo. And Don't skimp on the salt. Adrenals need salt.

I Don't know what you can do about your ignorant doctors - and they really are ignorant after that remark about ferritin! But, you can control your diet and eat more to help your convesion - not that you've got much to convert! And, no exercise! That lowers your T3 even more. Just gentle walking until you get decent levels of T3.

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