Test Results and a confused doctor

[Harrisan]

Hi,

I was diagnosed Hypothyroid a year ago and my dose of levothyroxine has been titrated over the year. During this time I've definitely had some improvement in that I do not fall asleep in the middle of the afternoon any more, however I have no control over staying awake once I am tired at night. My weight has ballooned by two stones in a year and even when I started a pretty full on exercise regime recently it barely shifted. I lost 5 pounds in the first two weeks then it yo-yoed up and down from that point by two to three pounds for another month but I didn't lose any more.

My main concern though is what is happening to my brain. I always had an excellent memory and vocabulary. These days I forget things in a way I would expect from someone in advanced stages of ageing. I forget whole conversations, I forget what I'm doing and can get confused very very easily. I struggle to find words, sometimes admittedly more complex vocabulary but sometimes just the names o everyday things. I can describe what I mean but the word stays on the edge of my brain. I am also starting to struggle with spelling which is really really upsetting to me as I have never ever had a problem spelling even the most complex and unfamiliar words (took me a minute to think of the word unfamiliar there).

I spoke to my doctor who asked me to share what I had read as she doesn't know anything about t3 replacement and combined t4/t3 ot natural thryoid. I suppose I'm glad she at least is interested enough to want to find out more because (as she says) 'it;s clearly worrying you'. I explained to her that I had late last year increased my own medication as I felt that I still had lots of symptoms and that I had felt better afterwards. However I think she misunderstood and thought I had only just increased it in February o she asked me to come back in two weeks for more tests and she'd request not just TSH but T3 and T4 as well (which confused me as I thought they always got that at my docs but hey-ho).

I had the test last week and have received a letter asking me to come in to see them. I am terrified that they are going to drop my levothyroxine. Although I don't think it's working fully it HAS made a difference and I KNOW I'll get ill exhaustion wise if they make me drop it. Anyway sorry this is such a long post but here are my results for ll tests so far (she said she could only give me TSH).

Range 0.4 - 4.0

12/3/14 - TSH - 9.33

29/5/14 - TSH - 4.14

1/8/14 - TSH - 1.74 - This was the point where my GP said that I was normal and he wouldn't increas me from 50mcg to 75mcg. Because I still felt so bad at this point I increased it myself and informed a different GP at the practice when I went for a different appointment in October - he was happy for me to take 75mcg and changed my prescription for me. I felt really good for a while then symptoms started creeping back so my latest (apart from last week which I don't have the results for) result was:

5/2/15 - TSH - 1.53 - again, the doc says I'm normal but I feel symptoms have come back. I have also been on a higher dose between august and february and it seems not to have altered my TSH at all.

I guess my questions are

If I increased my dose between August and Feb shouldn't that reflect in my TSH if it's effective? (i'm taking more T4 but my TSH hasn't reduced)

Does the fact that it's not changed possibly indicate that I need a higher dose or am not converting T4 to T3 properly?

What do I do if I go in and they say my TSH has dropped so they want to reduce my dose?

And in another illustration of my brain fog - I had another question but cannot for the life of me think of it!

Sorry for a long and rambling post - any help or advice would be appreciated!

[Harrisan]

Oh and in addition - I broke my ankle four weeks ago and have been reading that healing bones can raise your bodies metabolism (I've certainly felt less cold but that could be down to being stuck in one environment and not having to change environments and regulate my temperature) so I'm worried about any effect that may have had on my results!

[Kel8]

I know how you feel! My TSH is now suppressed at 0.02 and my doctor wants me to decrease my dose. I point-blank refused as I am starting to feel a little better. I increased myself after each blood test even though I was told I was 'normal'. Other members are more knowledgable than me and have recommended a TSH of less than 1 to feel comfortable. That's what I am sticking with! I think you will probably be better to increase another 25mcg.

[Stormx]

Harrisan

Oh yh I know exactly what you are saying I to have the problem of foggy brain, used to have a great memory and extensive vocab. I forget people names I have known for years, train of thoughts etc.

look into either combined or t3, I was put on Levo but it has done nothing for me so decided to stop, waiting to buy the t3 hopefully that will work for me,it's a battle hang in there

[humanbean]

My brain deterioration has been one of the most worrying things that has happened to me over the last few years. I've managed to claw some function back with the following things :

1) Improved my vitamins and minerals to optimal levels. If doctors ever test these (they usually have to be prompted to do so) they are happy to say that anything showing as being anywhere in the reference range, even the very bottom of the range, is "normal" and no action is required. Thyroid patients often have poor levels and need to supplement. The things that get a mention as being very important are : vitamin B12, vitamin D, folate, ferritin and (with lots of luck) iron too. Doctors should test these things if asked. Other things people mention are magnesium, selenium, copper and zinc. Be aware that some types of test are more reliable than others - some kinds of magnesium testing is often regarded as being of poor value, for instance. If your doctor says something is "normal" then you will have to fund your own supplements (if your levels are too low). And since doctors often prescribe doses which are far too low to do much good, I think people are better to be self-reliant in this respect anyway.

2) I actually had high or over the range B12 and yet I had symptoms suggestive of a B12 deficiency. Since it isn't toxic in the slightest I recently started supplementing with methylcobalamin (a form of B12 - there are several kinds), and other methylated B vitamins. It has made a big, big difference to how I felt. The cheap B vitamins didn't have much impact. (Please test B12 and folate before supplementing. Don't supplement B12 or folate in any form if testing shows a very low level. It may be necessary to get tested for Pernicious Anaemia and supplementing before testing for PA will make it very hard to get a diagnosis.)

3) I went very strictly gluten-free a couple of months ago. I just wish I'd done it sooner.

4) I've tried levo, NDT and T3 only. T3 does the job for me. Everyone has to find what works for them, and it could be any of the things I mentioned, either alone or in combination, and it has to be at the dose that makes you feel well. If you can't find a helpful doctor then, if necessary, people can self-medicate, buying the thyroid hormone products they need on the internet.

5) Learn how the thyroid and adrenals work. Buy this book and read it.

amazon.co.uk/Your-Thyroid-H...

Other people will have their own favourites and recommendations, but the one I've given is an excellent starting point.

Always get copies of blood tests done by your doctor, and make sure the reference ranges are included. Post them here for people to comment.

[rebekah40]

I think you will help to get a clearer picture when you get your T4 and T3 results. It would seem that your GP's have been dosing on TSH result. But you might have other things going on such as an issue with converting T4 to T3. Also from what I have learnt on here, you may need your vitamins and minerals checking i.e. Vit D, Ferritin, Vitamin B12. If these are low then they will impact on the absorption of the levothyroxine.

[Harrisan]

Thanks everyone!

Funnily enough, with everyone mentioning vitamins I initially had EXTREMELY low vitamin D when I was diagnosed and was put on something like 20,000 iu per day for six months. However, the doctor who told me my vitamin D was now 'normal' is the same one who refused to increase my medication because my TSH was 'normal'.

I'm actually just starting to take a big multi-vitamin supplement from Nature's Best so we'll see how that goes. Don't think they ever tested my vit B12 or 6 actually

[rebekah40]

If they haven't tested Vitamin B12 I would try and get it tested as B12 can imitate symptoms of hypothyroidism. It also impacts on memory (as well as a multitude of other issues). This is a link to the B12 deficiency website with symptoms b12d.org/symptoms-associate....

[Clutter]

Harrisan, I doubt your doctor will consider you to be overmedicated with TSH 1.53. Most people are comfortable with TSH just above or below 1.0, but some need it lower, or even suppressed, with FT4 in the top of range to feel well. Unless your FT4 &/or FT3 are over range I can't see any reason not to increase your dose to see whether it helps resolve your symptoms. Read the comments of Dr. A. Toft to Pulse Online on dosing and thyroid levels in the link below. Email [e-mail] if you want a full copy of the article to show your GP.

thyroiduk.org.uk/tuk/about_...

Low TSH + high FT4 + low FT3 is the usual indication for a T4 to T3 conversion issue. When you have your results post them with the lab ref ranges (the figures in brackets after the result) and members will advise.

[Harrisan in reply to Clutter]

Thanks Clutter, I have an appointment next Wednesday so I shall post the T3 and T4 results then - thank you for the link to Dr Toft - and the email to get the full article.

Yeah they were happy to leave me at 75mcg (although I'd be happy to try a 25mcg increase if it would help this brain nonsense) based on the 1.53 I'm just irrationally worried that I'm going to go in and the TSH will be like 0.1 this time (although the two tests were done only a few weeks apart 5.2.15 and 6.3.15) and they'll not give me a choice about dropping the levo.

Do you know what makes me laugh though? A year ago I was so happy to be diagnosed because I thought as soon as I got the medication right I'd be grand - I did not foresee all of this nonsense at all

[Clutter in reply to Harrisan]

Harrisan, if your bloods were taken at roughly the same time of day it's very unlikely your TSH will have altered much in two weeks. You may have to be quite insistant about wanting a dose increase and, if all else fails, tell the GP you are thinking about buying Levothyroxine online to see whether an extra 25mcg improves your symptoms.

If she refuses, it means she thinks you are adequately dosed, in which case she should investigate why you continue to be symptomatic. Ask for ferritin, vitamin D, B12 and folate to be tested. Low/deficient levels cause musculoskeletal pain, fatigue and low mood, similar to hypothyroid symptoms.

[Hidden in reply to Harrisan]

I agree with clutter on this one I did the same I was at 2 and they refused me so I said ok it s not the thyroid you better sign me off work for a month while you find out what it is. I had every test under the sun, I went back again and said you dont know what is wrong with me do you. Got a referral to an endo, and had the t3 theraputic trial which I am just at the end of at the moment. And it made a huge difference. my tsh 0.76 but I have some issues I think with my ft3 and ft4 just had my bloods done with blue horizon they tested everything and they are doind a free ft3 test when you spend over £60 at the moment so I go a full blood screen with vitd vit b12 and ferin and folate for £150 very happy still waiting for results though will be a week. I have been diagnosed 2 years now and have a very similar story to yourself. Dont give up see different gps at the surgery, change surgeries if you have to I am on my third and have finally found a doctor who can keep me calm and listens to me we dont always agree but she at least is interested.

I wish you luck, keep us posted on how you are getting on, it helps to vent.

[Harrisan in reply to Hidden]

Hmmmm I wish I could just get those tests but £150 is not an option for me just now. I'm glad you got referred and I'm at least hopeful that this GP seems interested!

[Hidden in reply to Harrisan]

yes i guess was gutted I had to pay for the tests though was saving to take my daughter to some university open days we have had to cross one off the list, two years is long time to feel rubbish so I bit the bullet and I can save that T3 is worth fighting for it even if it is just for a trial period. My doctor or endo would not test for the vitamins they called it hocus pocus......however this site has helped me find answers and dicuss with others how tackle things, I think I would have caved and lost my job b4 now.

[Hidden in reply to Hidden]

funny how I can type in a new language "brain fog" sorry for missed words and spelling it has become a bit of a normality for me, I really have to think about what I am typing.

[Harrisan in reply to Hidden]

Lol - I find that too - I have to check and recheck what I'm writing and even then it sometimes doesn't make sense if I come back to read it much later.

It's not good considering I'm trying to complete doctoral training in Educational Psychology at the moment. Assignments are a nightmare because not only do I forget what I've read and made notes on when I come back to use it in assignments but my writing style has really suffered. This is a one time chance though so I can't let this brain fog make me waste my chance!

[jeanlouise in reply to Harrisan]

This struck a chord! I was happy with my diagnosis too- that it wasn't anything life threatening and could be easily fixed with medication! My doc just got reception to ring to say I was hypo and left the prescription at the counter (for 25mcg!) with an info printout. I've had to sort out a specialist (still waiting), badger my doc for blood tests, put up with her defensive, rude and hostile attitude, worry I've got ME as she claims, and have today increased the dose myself to 75 (been on 50 now for two months) as my tsh is still 2.8. What I've learned on here is that you need to keep pushing and get as much info yourself as you can. My vitamins etc are at the low end of ranges so I'm going to supplement myself. If your vit D is low then you should be on a maintenance dose for 6 months. Hope you're better soon.

[Harrisan in reply to jeanlouise]

I'll be incredibly honest and say that when I read some stuff online after I did wonder if people were erring a little on the hypochondriac side and I was sure I'd be fine with the medication - like it was just a choice of deciding the medication would work for me. I apologise wholeheartedly to all the people I doubted in my head - it really isn't that simple!

I could go back an slap myself foe thinking that way.

[Coppernob]

Please also check out T3 only therapy. See paul robinsons book Recovering with T3 and there's a Facebook group. Lots of fascinating info. Docs not happy to prescribe T3 only but I'm managing to get mine NHS so far so it can be done.

[Harrisan in reply to Coppernob]

Thanks, my doc at least seems interested so fingers crossed!

[onecanhope]

Hello There Have you asked you gp to do an antibodies test

i did and hey were way of the chart nornal range 60ish and mine are 1300

i have been diagnosed with Hashimotos disease

my thyroid is literally burning out and nothing they can do except medicate

[Harrisan in reply to onecanhope]

I haven't but if I get no joy I certainly will!

[Harrisan]

Actually now you come to mention it, my first doc said they would give me the big doses of vitamin D and then a maintenance dose. However, the doctor who said I couldn't increase the levothyroxine cos it was normal also told me that I didn't need a maintenance dose of vitamin D because it was normal.

Should I have been taking a maintenance dose all this time?

Could that be affecting how I deal with the t4?

[Harrisan]

Ha! I just made a post of my docs visit fir the results! You should read it. It's a hoot!!!

Oh and my TSH hadn't gone down it had jumped from 1.53 to 4.3!! At least I feel justified in complaining to her that I knew my levels couldn't be right!