Weight : I'm newly diagnosed and very confused... - Thyroid UK

Thyroid UK

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Weight

fagpfc
fagpfc

I'm newly diagnosed and very confused . Doctor told ne I was so low he had never seen it before and was surprised I was functioning. Since then I've been given Levo. Pins and needles stopped and my running got easier. My Goitre has gone down but my weight is going up. Which is making me panic. I'm not right by a long shot but some things are easing. Should I reduce the Levo. I do not want to gain more weight. I hate the way I'm looking.

13 Replies

If you want advice you need to post results with the ranges shown in brackets.

SlowDragon
SlowDragonAdministrator

It takes a long while to rebalance hormones. We have to increase dose slowly and retest 6-8 weeks after each increase. The dose you start on often needs increase, but only when bloods show your ready for it

Can you add your results and ranges from before starting on Levothyroxine and most recent retest

How much Levothyroxine are you currently taking?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamins are common and may need supplementing to improve

Important to know if cause is autoimmune thyroid disease (Hashimoto's) diagnosed by high thyroid antibodies

fagpfc
fagpfc in reply to SlowDragon

wow much more complex than i thought. Got some advice yesterday, she told me to get ALL result. (easier said). The receptionist couldn,t find some. So all i know , and don,t understand , is that the first reading 50, then it went down to 10. last one was said to be TSH. which is nearly normal they said . It is 4.936. I am afraid all there numbers don,t mean much . I don,t understand how some have gone missing but when I go back I will ask the doctor. Unfortunately since diagnosed I have just been getting phone calls off him. I am now on 100mg Levo. He think this will be it but I do have more blood tests done next week. My blood tests haven't been every 6 weeks , they have been every 3 weeks. Will this make a big difference?

fagpfc
fagpfc in reply to fagpfc

I have also not been advised about some of the matters you mentioned. When and spaces in between my other meds is half an hour. half an hour before food. That is it. So you have educated me there. Thank you for that.

SlowDragon
SlowDragonAdministrator in reply to fagpfc

Patients find testing is best at 6-8 weeks

Often GP's leave it too long, rather than to short a gap between increase in dose and testing

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

You need to get hold of copies of test results.

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

ALWAYS keep good records of what dose, and how you feel at each test result

And always try hard to stay on exactly same brand of Levothyroxine at each prescription.

fagpfc
fagpfc in reply to SlowDragon

Thanks. Great advice. I will ask for print outs when i see my own doctor.

Should I reduce the Levo.

No.

You need to start keeping records of your tests, the results, the reference ranges, and each time you have a blood test make notes about your symptoms and score them. So if you get headaches note how often and score them on the level of pain. Do this for each symptom.

The easiest way of getting info on your test results is described in the first reply to this post :

healthunlocked.com/thyroidu...

Doctors are convinced that hypothyroidism is a minor and uncomplicated disease, and for many sufferers this might be true. But about 15% - 20% of people never feel well and continue to have symptoms and problems even when doctors think they are well treated. There are ways we can help ourselves, but you need numbers in order to have somewhere to start.

But without information about your results and the reference ranges nobody can really help - we need information to go on.

fagpfc
fagpfc in reply to humanbean

Thankyou. Just been for my results of last blood test. Unfortunately not my doctor. However he has increased my levo dose and told me my TSH was just under 50 to start with and is now 4 so its good. Another 25mg will bring it lower. Fingers crossed.

SlowDragon
SlowDragonAdministrator in reply to fagpfc

Good, but next time politely insist on printed copies of all your blood test results and ranges

Make sure to retest after 6-8 weeks on 100mcg including FT3 and all vitamins

Unlikely to get all these tested on NHS, you may need to test privately

Getting vitamins optimal, always testing first, is often key

humanbean
humanbean in reply to fagpfc

A TSH decreasing from 50 to 4 is a good start, but isn't the end of the job - a TSH of 4 is still under-medicated. Most hypothyroid patients need a TSH which is 1 or less to have a hope of feeling well.

Thankyou. Looks like I might need to be firm . Doctor said when its 3 its normal, Written it down now , Things that have improved ( and they have) but plenty hasn,t. If Idont get right and they say I am I will at least have it written down. Thanks everyone. I was all set to stop the levo thinking that was my weight!!! Ran 10mile last week last week. Ate 1200 calories a day and hey presto all that and I gained a pound, very disappointing.

humanbean
humanbean in reply to fagpfc

A TSH of 3 is not normal either. You should find this link of interest :

healthunlocked.com/thyroidu...

I wrote it with elderly people in mind but the information given covers adults of all ages. Just looking at the graph shows you that the vast majority of people have a TSH much lower than 3.

fagpfc
fagpfc in reply to humanbean

Thankyou. Very interesting and very worrying at the same time. God knows what we would all do without the internet!!

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