Thyroid UK
89,000 members103,535 posts

I feel stupid

After having my thyroid removed 12 years ago and believing every word my doctors said I am only now realising that all my other problems stem from this op

Overweight

Hot sweats

Ache bones

Type 2 diabetic

Muzzy head

Ulcerative colitis

Feeling tired all the time

I would like your help to put to file together to present to my GP - I have never seen my test results - all I get is within normal levels

I am on 125 levothyroxine per day - and I was only told last week to take it on its own with water first thing in morning at least half an hour before eating

12 Replies
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You have rights to see all of your medical records. Theres a post on here about it if you do a quick search.

I had my thyroid removed 13 years ago and it's been way worse than it was being hyper! Wish I'd never done it to be honest.

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Patmayhew,

Ask your GP receptionist for a printout of your most recent thyroid results and ranges. If you are refused tell them the Data Protection Act entitles patients to their test results and you will make a written subject access request if necessary. ico.org.uk/for_the_public/t...

When you get your results and ranges post them in a new question and members will advise whether you are optimally dosed on 125mcg.

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YOU ARE NOT STUPID - PLEASE STOP TALKING YOURSELF DOWN

Am 13 years post rai ablation for Graves Disease - the biggest crime is that the medical profession don't think we are worthy of being told the truth or the real implications of the treatment they deem fit for us - we're given a quick fix - the chances of seeing the same NHS specialist some years later - remote - and so it goes on - we have to try and pick up the pieces whilst being somewhat under par in so many ways - bit like being in a three legged sack race with a boulder as your partner - ?

My 14 year old car gets a better service than I do - and it is more reliable than it's driver !

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Do you take any other meds besides levo? And what about supplements?

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Pentasa

Onecal

Forceval

Mercaptupurine

Vit D

I think that's all

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I gather from that list that you have severe gut problems. I couldn't find out was Onecal was though.

This makes it doubly important that you find out how good your levels of nutrients are.

I looked up Forceval and found this link - don't know if it is what you are taking though.

If it is, I have to say the levels of supplements are very low. For example, 12mg of iron will do practically nothing if you have a deficiency. You might as well wave an iron pill under your nose and have a good sniff. ;)

When I was iron deficient I was prescribed the equivalent of 207mg of pure iron per day. When my prescription ran out I started buying my own iron pills. It took me nearly 2 years to get my iron levels up to optimal. My experience is not that uncommon in people who are hypothyroid.

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Onecal is calcium

I have had a iron delusion about 6months ago as my blood count was 48

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If you are stupid, then I am equally stupid as it took me 8 years to realise that my lifetime's belief that doctors worked purely in the interests of their patients was a complete load of bo***cks considering the treatment I was given for my lack of a thyroid gland.

After becoming fully acquainted with this situation and what treatments other than levothyroxine are readily available for it, I now know full well that the doctors either simply omit to tell you the full and truthful facts or they are so brainwashed by the BTA/NHS in general that they now actually believe the lies that are being force fed to them.

In my quest to get NHS prescribed NDT, the doctors have made 2 attempts to stop me from complaining. They have offered me a regular PRIVATE prescription which would cost me an arm and a leg and they have offered me combined T4/T3 treatment with the same ratios as in Armour NDT. I have refused both.

Provided that all blood test results are acceptable, you are, without a thyroid gland, unlikely ever to get well if you continue with same treatment you now get. Consider trying to get the combined treatment T3/T4. If that fails the only feasible alternative remaining is to buy own NDT - asking your doctor for this on an NHS prescription is the equivalent of asking him to give you a prescription for a month's holiday in the Bahamas.

Your first task it to find out as much as you can about the problem and you could do no better than to read up on these forums and on others elsewhere that may be mentioned. It's only when you can speak with some confidence about it that you will gain confidence and be able to see that it is your doctors who are stupid, not you.

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Have you managed to obtain your test results with ranges ?

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No but I'm having my blood done next week so I will post as soon as I have them

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I have always found the my doctors 'mask' the problem and give you medication which helps with the symptoms but dont actually solve the problem. I found out more information for myself. I cut out the carginerous veggies a couple of years ago and 12 months ago went gluten free and that has helped me tremendously with the brain fog, feeling lethargic all the time, my joint pain is a lot better and I sleep better. My all be co-incidental but I feel better so although sometimes it is a pain to find something to eat especially when eating out it is worth it for me. Also I had raised ALT levels for three years before actually being told and since cutting out the gluten they have gone just under the recommended level now.

I found out a lot of information from livestrong.com

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Not bad! Only 12 years to tell you how to take it - I despair :(

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