Doctors can't seem to get it right.

[Radders14]

I've been suffering with my thyroid disorder for over 10 years and I'm 28. Every time I have a blood test, my meds are increased which doesn't seem to help remove the unwelcome symptoms particularly the sluggish, exhausted feeling, I often feet so tired, my eyes burn throughout the day and at certain times of the day they start closing regardless of how interested I am in something or at work. I recently moved to Qatar with my husband and the doctor was shocked that my prescription was so high and nothing had been done, finally looks like I was see an edo soon, the pharmacist was so shocked at my prescription she questioned it and then called the doc to check this was correct. I can't help but think this is not a good sign. Not sure what self study I should do or what to do myself to improve things. My husband often thinks I'm being lazy but then remembers, and my memory is now becoming a massive issue, I can't seem to remember my PIN numbers I have used for years, my phone number, even my age, I often forget my own age and it's getting worse very fast. On waiting for my next appointment I just want to see if anyone else is having these problems, is it normal for things to get bad suddenly, lucky for me I'm not having weight problems as such, I have a post preg belly but baby is 18 months old and it's slowly going. Also sleepy all day but not getting to sleep at night till gone 4am yet baby never wakes so I should be getting good rest.

Any comments would be appreciated

[helvella]

So how much are you taking?

I would very much wish you to be tested for vitamin B12, folates, iron/ferritin, vitamin D. (Possibly Qatar is better than the UK at the moment for trying to increase D levels!)

When do you take your levothyroxine?

Do you have any blood test results? (Include reference ranges, if you can, please.)

You will get some suggestions, but we do need at least a bit more to get the picture better.

Rod

[Radders14]

I'm on 200mg of thyroxine. I started on 25 and it's gone up year by year. It's seems to have an effect for a few months then the blood test results go back to what they say are 'worrying levels' and the symptoms reduce but then come back and I'm given another med increase. The last doctor said I should be on another 100 making 300 but when does this cycle stop. I take them in the mornings now but have tried many different times of day. I don't know my blood test results but this time waiting my next appointment, my symptoms have got silly, the memory problem has cause huge issues, and I keep a diary but I can't even remember what my notes mean now and I keep getting lock out of things forgetting pins and passwords.

I think getting a referral here is easier as its all on med insurance so it's private. I just wonder if the rapid change/ worsening of symptoms is normal, I've not had his before and normally.

[helvella in reply to Radders14]

We have seen people on a huge range of doses. There are very good physiological, biochemical and what-have-you reasons that people's requirement vary - sometimes by large amounts.

Are you willing to post (or send a private message to me) with you height and weight? I could then see what some formulas suggest might be appropriate if you have no thyroid function left.

May I also check that you are taking your levothyroxine well away from food,drinks (other than water), supplements and other medicines? We suggest a two hour gap either side for most things - rising to four hours for iron supplements and calcium.

Rod

[Radders14]

Oh sorry te b12 thing, I was tested in pregnancy and they thought it was due to pregnancy but it hasn't gone, not into the idea of having the injections to prevent it as a it's linked to causing leukaemia, but then so is anaemia. My mum was diagnosed with laukaemia in August las year and passed away due to it in September. I'm hoping the research and med knowledge is a better standard here. It seemed to me that the NHS didn't have time

[helvella in reply to Radders14]

Yes - there are links between odd B12 levels and leukaemia - and, sadly, you must be very sensitive to them.

Low B12 can have a wide range of symptoms. It is very important not to remain low in B12 because not only do you suffer those symptoms, but you can also suffer irreversible nerve damage.

If you are not too, too low, then simple B12 tablets are enough for many people. (For example, 1,000 microgram Methylcobalamin can be a reasonable start. Or 5,000 if a higher dose is required.) And there are other options.

I have come to the conclusion that there are pockets of the world where they understand some disease much better than elsewhere. But these pockets seem to be almost randomly distributed - not always related to money. And a pocket that is good for one issue might be pretty poor for lots of other things. But we can hope!

Rod

[shaws in reply to Radders14]

As Helvella says, many people have the need for larger doses. Before the TSH became the way they diagnose nowadays, the usual dose was between 200mcg and 400mcg. There was no fibromyalgia, chronic fatigue and ME as far as I am aware as they were only named about 15 years ago.

Your B12 is vitally important - for your neurological health as well as everything else. Some symptoms overlap with hypothyroidism.

thyroiduk.healthunlocked.co...

nytimes.com/2011/11/29/heal...

[Radders14]

I replied to Rod, private message. But if it didn't go I'm 5ft5 and 10 3/4 stone, heavier than my same height friends but just as slim, I have a broad build, large back and shoulders but I know in overweight, not massively though.

I don't think in dramatically B12 deficient but I'm often anaemic, I keep iron tablets and vitamins d tablets separate from thyroxine and try to take the thyroxine an hour away from food or hot drinks.

This site is helpful though

[Hashi_since_age9-1988]

get all you thyroid levels checked. TSH, fT3, TT3, FT4, TT4, rT3. Maybe it will show something up