Need Help

I am new to this site .

I was diagnosed about 10 years ago .I was borderline and I was prescribed 75mcg Levothyroxine.

I have regular bloods done but only because i have other conditions.I get the feeling no one really looks at the Thyroid numbers .Over the last 10 years my memory has got worse .A few years ago I went to my Gp and she sent me for counciling and a gave me a fake scan which they never gave me the results of .

This was to fob me off because I told them I thought I had Dementia      and 10 years ago The medical profession could not diagnose these conditions especially in some one in their early 50s as I was . So I was fobbed of and left to get on with it.

I cant cope again and I am reluctantly going back to my Gp with worsening symptoms forgetfulness 

cant remember things thoughts going round in my head esp music depressed .I feel one day I am going to wake up and not know who I am . Sometimes at night I go twitchy .I just want to come off all my medication to see if I improve but I know its probably not the right thing to do.

I know when I get to the gp They wont know what to do with me .I prob end up having to draw a backwards clock and asked the name of the Prime Minister . And she will say there is something wrong .

I dont know what to do Iam hoping someone can advise me.

Thankyou.

28 Replies

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  • Have you had you Vitamin B12 levels checked margmitch?

    J

  • I dont know .I have lots of blood tests I am on methotrexate for arthritis .

    I never have my results .Even though I have bllods done monthly. I ll ask when I go to gps . Thanks . 

     

  • You really should ask for a print out of all you tests. You are entitled to them and they are very useful to have to hand.

    When you get them, check if you had B12, Folate, Ferittin and Vit D tested recently.

    You can make a new post here for comments from experienced members. 

    J

  • You now have to take charge - after ten years of getting nowhere its the only option, with the help of the members on the forum.

    Most have excellent stories which the BTA probably wouldn't like published.

    First, make an appointment to have a new blood test. Tell your GP you want a full Thyroid Blood Test, that includes TSH, T4, T3, Free T4 and Free T3 and antibodies plus Vitamin B12, Vit D, iron, ferritin and folate. Tell him you are fed up after ten years and have taken advice.

    The blood test must  be at the very earliest and don't eat before it. although you can drink water. Allow 24 hours between your last dose of levo and the blood test and take it afterwards (put tablets somewhere else so you aren't on automatic pilot on the morning of the test). Taking levo before a blood test skews the results - you don't want that.

    Get a print-out of your results with the ranges and post on a new question for comments.

    Vitamin B12 and Vit D are essential for neurological assistance. All the vitamins/minerals should be at optimum.

    Some surgeries charge a nominal sum for the print-out, mine charge 30p.

    Some labs don't do FT3 and FT4 as it is though unnecessary but it is necessary if you're feeling unwell because T3 does all of the work in our body, from head to toe and we need sufficient in our cells for us to function normally. The TSH is meaningless unless it's well above scale and even then it might not register with the doctor. The worst thing they can do is keep your dose low in order to keep the TSH anywhere in the range. We need 1 or below or suppressed (and no! we wont get osteoporosis). We will if underdosed most probably.

  • Hello, I ve got my readings would you help me with them please.

    The Dr wants to see me . 

    TSH 3.83 (0.3-5.5) It says no evidenceof primary thyroid disease.

    VitD below range 31nmol/l (50.0-144.0)

    Ferritin (xe24r) 80ug/l (30.0-400.0)

    B12 (xe2pf) 463ng/l  (197.0-771.0)

    folate (42u5) above range 20.0ug/l (3.8-16.0)

    Haemoglobin5.5%(4.0-5.9)

    Hope I given you the important ones .

    I doesnt look like my B12 is low but my vit d is .I am still at a loss as to why I have my symptoms .I expect The Dr will say my medication is ok and no need to up the dose .What do you think. 

    Thankyou for any help marg.

  • This is from Thyroiduk.org.uk the main website. If your doctor could also do some of the other tests, i.e. T4, T3, Free T4 and Free T3 you would have a bigger picture. Or if you can afford it you can have them done privately and get a small discount.

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

    Your doctor hasn't taken any notice of your clinical symptoms I assume. The TSH they've been told is the 'perfect' test when in fact it isn't. The TSH changes throughout 24 hours of the day.

  • The dr told me when I asked for a full blood count that they will only do the bog standard thyroid test .The lab will not do anything else unless they think your readings look abnormal .Looks like I am no further forward than I was before apart from finding out my B12 is ok . 

    She did say I could see an Endo if cant find out whats up  from the tests I suppose . 

    I may take a private blood test but what good will it do me if Drs havent any more idea than the patients as to what dosage I should be on. 

    Dont know where to go from here .Maybe I am going senile after all. 

  • If you do decide to get your own blood tests and post the results with the ranges, members will comment. You can then show them to your GP (many take no notice as they aren't NHS) but many doctors wont do them in the first place due to the TSH only. Many members, after advice from members source their own thyroid hormones.

  • I saw my Gp again today as They called me in about My low Vit D. She was a young Indian Woman very nice.She listened and said to me are You from a medical background. I said Ive took advice from Thyroid UK . I said I think My symptoms should be treated rather than treating on my numbers alone .

    Gave me VIT D and referal Endo .

    I feel much brighter I told her my symptoms and said I am very worried about my memory not sleeping low back pain husky voice etc.

    Its a start and at least I feel like I had some control in My treatment .I also asked for a Vit D without Calcium in and also one that wouldnt clash with Thyroxine as the one from the Rhumatologist was twice a day when the hell could you take those .

    Ive probably got it all wrong with supplements but Iam trying to help myself .I ve also started on Vit b12 this morning a good one from Amazon.

    Thanks  marg

  • Always take levo apart from other meds. It is 4 hours apart from Iron and I always leave 4 hours anyway if I take other meds. Others have said that, apart from iron, 2 hours is o.k.

    On reading the above your TSH at 3+ when it should be below 1. email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's Pulse Online article. Question 6 is the one you want to highlight. and you'll see here how low the TSH can be.

  • Is it the Jarrow B12 lozenge ?  If so keep it under the tongue until is dissolves to avoid any stomach/gut issues that may prevent it being absorbed.  Is it the 1000mcg or the 5000mcg ??

  • thankyou .I ll take your advice .Its some hope for me x

  • Are you taking meds for anything else in addition to the arthritis ?  Is it RA or osteo arthritis ?

  • Margmicht take baby steps and follow the advice here. Shaws comprehensive list of testes. I used to feel like this. Now self medicating with the help of this site and gaining my mind back. Ssssslllllloooooowwwwwlllllyyyybut it's coming back. Calm yourself. You're not going mad it's this disease 

  • I am taking meds for RA. High BP .and Thyroid Hypo. vit c.

    Methotrexate by injection once a week . Hydroxcloroquine as well. both for RA.

    Thanks.

  • Have only just spotted your reply.  If you want the person to see your reply - then you have to click onto the Green Button - marked Reply - and then the person will receive an alert.

    Am wondering if your thyroid is being optimally treated ?  - raised blood pressure can be connected to low thyroid hormones - as well as low iron - folate and so on.....  Do you have Hashimotos ?  Are you taking supplements ?  I would have the tests for vitamins and minerals suggested by shaws.  Could help you to feel better.  Also have the thyroid anti-bodies tested.

    As RA is auto-immune I have read that being gluten free helps to heal the gut and the various inflammatory conditions.  I have Crohns and Hashimotos so have been gluten free for some time and my anti-bodies have come down - at last !

  • Thankyou for your suggestions but I dont think I could stand much more elimination from my diet .I have been on a no sugar Carb diet since last December .Its been very tough as I havent had a cake sweets bread etc for weeks. I ve lost some weight but not as much as you would hope .I dont cheat .I had to lose weight because of my RA . I think it must be my thyroid again stopping me losing anymore weight On top of all this I ve had all these other symptoms with my memory which has really made me very low but I am a Taurus and we dont give up easily  ha ha and also this site has given me a bit more hope. I am also now going to see an Endo !!!!! I live in hope .

    Marg .

  • I see you have been taking Levothyroxine for 10 years. Have you never had the dose increased? 90% of people with hypothyroidism have an autoimmune condition where antibodies progressively attack the thyroid and destroy it. If you have this condition then you would almost certainly need an increasing dose of Levothyroxine to keep up with the deterioration of your thyroid. 75mcg a day is not a high dose.

    Ask for the results of your last thyroid test and post them here (with the ranges, usually the figures in brackets). And read up on the symptoms of hypothyroidism and see how many of them you have. Do you take your Levothyroxine at least 2 hours away from food and other medication (except Vitamin C)?

  • Thankyou .Well to be honest I havent been .This morning after reading up last night on my condition I took them 30 minutes before my breakfast. But I been taking all my medication at all times of the day .Not one of my Gps have ever revued my Thyroid Meds no one bothers .I think because there is no one with sufficient knowledge about many conditions they just either cant be bothered or They are so overworked They havent the time to  monitor my stats .

    I am not confident enough to challenge drs .My memory is poor I cant take in anything I read so forget easily so I feel intimidated in the Drs.

    But reading the replys on here has given me hope as I honesly think I have Dementia.

    Thankyou.

  • b12deficiency.info/films/

    Watch the 3rd video down to see just how much damage can be done by LOW B12.  Please have yours checked along with the other suggestions.  You will feel a new person when your B12 is around 1000.  Just deal with one thing at a time - so start with B12.

  • i have my alarm clock to go off early and have a bottle of water by my bed and thyroid meds. I take them and go back to sleep...i wait a hour to eat, i wait 4 hours before taking any other medication.....and i dont even drink milk at breakfast or orange juice with vit d hence found they were blocking absorption and my meds started working better without being blocked.... it sounds like you definitely need to test your b12 and vit d3 and iron and ferritin serum even if you have to get them tested yourself.....because over the counter medications can do wonders if you are low......and it is dangerous to be low.... i went from feeling like i was 98 to feeling younger again when i found out i had deficiencies and began supplementing........it is that important

  • Thanks I watched the film.There is so much stuff to take in but its given me food for thought. I will try some good B12 .

  • As Marz says, one thing at a time. There is a lot to think about, and when we are hypo, our brains Don't work very well. You can't expect to take it all in at once.

    Reading through all you've said, I'm pretty sure your B12 is low. And if your B12 is low, then your thyroid 'medication' won't work properly.

    So, one step at a time : get that B12 tested. Don't start supplementing B12 until you have done the blood test, or it will skew the result.

    Ask for a print-out of the results - it is your legal right to have one - and post the result on here.

    Someone will tell you how to improve the level - but first, we have to know what the level is. OK?

    Please Don't give up on yourself. I very much doubt you have dementia. And correcting your B12 will make you feel so much better. x 

  • good advice......when mine was low normal...that is why just dont let a dr tell you that is in normal range...i was forgetting peoples names , forgetting my train of thought in the middle of a sentences, extremely forgetful.......it felt overwhelming.....all the time.....i was midrange normal...it was also making my hair thinner....i had to make list for everything......still taking the b12 losenges under my tongue every day with a great quality b complex, multi vit, vit d 3, ....it is that simple.....and if you have to take any statins.....they steals your q10 hence i take q10 every day.....the water solutable form that ends in "ol"

  • Thankyou Ive been so scared . Ive done things like lost my car in  the car park . put something away for xmas and forgot it was there .I have no sense of direction at all. Ive had number blindness all my life .

    I been so desparate I told my husband I dont want to live if I get a diagnosis of dementia.

    I started with this !0 years ago and saw a gp he gave me a test and sent me to counciling .It was compleately useless and the woman said it is your right to have a scan of your brain she arranged it but I knew it was a con as the scanner looked like an old iron lung with just a nurse in the room .Where was the radiographer the nurse had nt got any protection and she was standing at the side of me .

    I was never told any results and no one mentioned it again.

    I have been struggling on and off ever since some days are worse than others .Tiredness makes it worse .I sometimes cant remember what I did last week let alone when I was younger . 

    When I see my Gp I wanted to mention all this but I was worried once I started the ball rolling and it was confirmed I got dementia theres no way back. As long as I kept it to myself it would be alright .But I broke down to My husband on Tuesday and I found this site.

    Thankyou all x

  • Well, you're here, now. That's the main thing!

    GPs know nothing about nutrition. They Don't do it in med school. Even if he'd done a B12 test, he wouldn't have understood the result. But, we do. So, just go and tell him you wan the test.

    Don't be scared anymore. We're here to support you. We all know what you're going through - your doctor doesn't! So, chin up! Big smile! You're on the way to good health! :)

  • Hello again, I saw my gp today as expected she would not do a full thyroid test. she would only do TSH and B12 FER FOL VITD CALCIUM .PHOS FBC CAALB GPIP PA1C SFOL. She said I should nt believe things I read on the net They are not Drs !!!!!    I will see what the results are and take it from there . She said I was tested last september and the readings were fine .I will make sure I get a print out when I get these results .She did say if I am still unwell after the bloodtests she would consider an Endo Thanks for your help so far .marg. .

  • Well, if doctors believe that what was fine in September is definately going to be fine the following April, I think it's a damn good job we aren't doctors on here! Someobody's got to talk some sense! A lot can happen in seven months.  

    Most doctors dislike patients researching things on the internet. They know that if we do that, we're going to show them up for the ignorant so-and-sos they really are. Just ignore her.  She obviously knows very little about thyroid, anyway.

    However, in her defence (now, why would I want to defend her??? lol) even if she did order a full thyroid panel, the lab would probably refuse to do it. It's utterly rediculous that lab technicians can over-ride a doctors instructions, but that's the situation you have in the UK at the moment. They will do a load of utterly useless tests rather than the pertinant ones that might actually help in diagnosing the patient! GPIP? What the hell is that?

    Anyway, at least she's ordered a goodly amount of vits and mins, so that will be helpful. And you have the posibility of a referal to an endo. So, it's not all bad! :) 

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