Please help I'm new .

[chibby1]

Hi one and all I'm new'ish on here . Been feeling dreadful for ages but got loads wrong C O P D - R/A . Plus I have been on levothyroxine for 12 yrs , I take 200 mic each night . Feel like I have the flu most of the time , we live in the backwoods of England so doctors are few and far between . Should I be tested regular taking these tablets or do I take them for the rest of my life ? . Got help with my other illnesses so I am down to these pills . I would say I'm tired , cold , snappy and not much interest most of the time . Please can anyone give me some good advice , chibby1 .

[SeasideSusie Remembering]

chibby1 I too have COPD, plus Bronchiectasis, as well as Hypothyroidism.

You should be having annual thyroid blood tests to keep an eye on your levels and adjustment of your dose if necessary. When was the last time you had thyroid blood tests? Maybe you're not optimally medicated.

You are on Levothyroxine because you can't produce any thyroid hormone yourself, so you are given replacement hormone. Levo is T4 which is a storage hormone, and this converts to T3 which is the active hormone that every cell in our bodies need. Ideally, annual tests would test TSH, FT4 and FT3 but usually only TSH and FT4 are done, some doctors do TSH only which doesn't give the complete picture.

If you've not had a test done in the last year, make an appointment at your surgery. Book the very first appointment of the morning, fast overnight (you can have water, have breakfast after blood draw) and leave off Levo for 24 hours. This will give the highest possible TSH which is what is needed when looking for a dose increase or to avoid a reduction.

The results should be back in 2 or 3 days, so ask your surgery for a print out of your results. You are legally entitled to them under the Data Protection Act. When you pick them up, make sure the reference ranges are included. Your results should look something like,eg

TSH: 1.7 (0.20-4.20)

FT4: 17 (12-22)

Once you have the results, post them in a new thread and members can comment.

It would be a good idea to ask for vitamins and minerals to be tested as well, optimal levels are needed for thyroid hormone to work properly, so ask for the following:

Vit D

B12

Folate

Ferritin

Again, post the results with reference ranges and members can advise if your results are optimal, and suggest supplements if they're not.

[chibby1 in reply to SeasideSusie]

WoW Seaside Susie , Thank you so much for that info , well over a year since I had blood test , they seem to take more of a interest in my C O P D and R/A . The wife and I are both in our early 70s so a lot of the jargon I see on here means very little to me . I have learned more from you than the doctor has ever told me . Just felt so crap for ages now so trying to narrow it down to what's going on . Us older ones seem to get left behind here in darkest Yorkshire our doctor works 2 days a week , plus I do think they look after younger ones better as we have had our life . I shall follow your advice re blood test and see how I get on . Thank you so much for your help . CHIBBY1 .

[SeasideSusie Remembering in reply to chibby1]

Just a thought chibby1 I see you take your Levo at night. That's fine, many members find that suits them better. I wonder if you know the right way to take your Levo for it to be absorbed properly.

Levo should be taken on an empty stomach, one hour before or two hours after food. When taken at night (bedtime) this is best about 3 hours after food. I can't do that as I tend to snack during the evening so I take mine in the early hours of the morning when I need a trip to the loo.

Take your Levo with water only, not a cup of tea, coffee, cocoa, milk, just water.

If you take any other medication or supplements, take these two hours away from Levo, and if you take iron, vitamin D or calcium you should leave four hours.

[chibby1 in reply to SeasideSusie]

Hi Seaside Susie , Thank you once more for your help , just says on my levo 2 to be taken each day . I take ten tablets all together just before going to bed , 2 of which are levo's . Plus I wash them all down with a mug of tea and have done so for 12 years . Amitriptyline , Adcal D3 , Atorvastatin ,Bisacodyl . Dihydrocodeine .Plus at the start of the week I take Methotrexate and Folic acid . I take pain killers if and when each day . Plus 2 different Inhalers . I shall sort them out and follow what you say and see if it makes a difference . Plus what I have been told on here I think I need to pay our doctor a visit and ask some questions . Thank you for your help and have a lovely weekend whatever you do . Chibby1 .

[Marz in reply to chibby1]

Yikes - have just spotted you are on Statins. It is my bedtime here in Crete so will return to this thread in the morning - if others have not passed on their wisdom then I will be giving you mine

[chibby1 in reply to Marz]

Thank you so much Marz for your help . Have a lovely night's sleep and Best Wishes from darkest Yorkshire . Take Care , Chibby1.

[Marz in reply to chibby1]

How long have you been on Statins ? Years ago before thyroid tested came into being in the early 70's - people with raised cholesterol had their thyroids treated. More than often it is a Hypo symptoms. We need cholesterol for ALL our hormones and the brain is more than 25% cholesterol - so with 7 million on statins in the UK is it any wonder dementia is on the rise.

VitD is processed in the skin from sunlight along with cholesterol - so block it and you will have Low D and all the illness it brings with it.

There was research done on people dying in hospital over many years - they had LOW cholesterol

When taking statins you should also be prescribed CoQ10 - which is blocked by the statin too. It is needed in every cell for energy. The same pathway in the body is used by VitK2 MK7 - so again statins can cause heart attacks as K2 directs calcium away from the arteries. There is a Research paper on this very thing - published recently.

When Research tried to prove statins did not have side effects - 6000 people had to be removed from the research in order to reach that conclusion

You couldn't make it up ! So do obtain your Test results as a matter of urgency and come back to the Forum and start a new thread with the results - otherwise they will be missed.

ncbi.nlm.nih.gov/pubmed/256... - Statins and heart disease - see above.

drmalcolmkendrick.org/

Many of us follow the above Doc - he wrote the book - The Cholesterol Con.

anh-usa.org/the-grave-dange...

Another interesting link above.

Happy reading. We have to learn for ourselves if we want to be well. Click onto my name at the top of this post and you can read my Profile - so I am not a medic - just someone who has travelled the bumpy road to wellness and still surviving and still learning

[chibby1 in reply to Marz]

Thank you for that Marz you have given me loads to ponder . Weekends are busy for us hence the late reply . My head is full of so much stuff at present I don't know where to start . Yes surviving is the name of the game for me as I lost Mum , Dad and Sister before they reached 51 . Making appointment on Monday all been well for a blood test with the nurse , then ask for the print off of my results . My R/A been bad today and very stiff , yet my COPD has not played up , I have just got to get to the bottom of things and try and feel a bit better for hopefully the arrival of summer . It would be great if changing my pills and how I take them could make me feel a bit better . Just been so tired of late and lots of little hobbies to do but just could not be bothered with them and that's not me . Looking back I think I have been silly in trusting our doctors , I just expected them to do and try their best for us all . But after reading things on here it seems better looking things up and trying to narrow your field of illness down and trying to help yourself more . Well its bedtime now for us Marz as I go to church on Sunday and so get up early . Hope you are having a lovely weekend and thanks again for ALL the advice and help you have given me . I sure have lots to go on and ponder while trying to build a new me , with the hope of feeling a lot better hopefully . Best Wishes from Chibby1 .

[Marz]

As you are in Yorkshire -or further away from the equator - then it is possible you will have LOW VitD. I recently read how low levels are linked to COPD. Google - COPD VitD PubMed - and research papers will appear. 😊

[chibby1 in reply to Marz]

Hi Marz , Thank you for your reply and help , yes we are in the back of beyond here . Strange you should mention VitD I was put on tablets for that only 6 weeks ago . I have never understood how I had C O P D as never had a cig in all my 69 yrs not even at school , plus played sport right up till 12 yrs ago when all my problems started . I shall look into what you have told me and Google-COPD VitD PubMed . Thank you again I have had more good advice on here than I have been given at the doctors over the past 12 yrs . Chibby1

[Marz in reply to chibby1]

I was diagnosed with Hashimotos in 2005 at 59 and had just retired to Crete. I have spent hours reading and learning as much as possible. I also have observed people around me and often check out various conditions people have v a thyroid problem. There are so many conditions linked to a poorly performing thyroid. I have pals with asthma - so in goes asthma and thyroid PubMed and off I go. I have a friend in the UK with COPD and long before he had the diagnosis I had my suspicions there could be an underlying cause PubMed is the biggest website in the world I believe - storing all research done. A great resource.

Also VitD is powerful and your condition could be linked to LOW VitD. Do you know your actual result ? What dose has the GP prescribed ? They often give you too little a dose. VitD is a steroidal pro-hormone that is anti-inflammatory - so much more than a vitamin. I have Crohns and had gut TB in my 20's - both conditions linked to LOW VitD and of course other issues linked to thyroid. So understanding the ROOT cause is often helpful so we can deal with that better rather than deal with the symptoms of whatever the condition presents.

So carry on reading and asking us questions We love a challenge

ncbi.nlm.nih.gov/pubmed/214...

The above link is a start for your reading !

[chibby1 in reply to Marz]

Take Adcal-D3 750 MG/200 UNIT CAPLETS . Take 4 per day . No got no results or readings yet . But all that will change starting next week . Thank you so much for ALL your help I now know what to look for on my laptop . Chibby1 .

[Marz in reply to chibby1]

I have a feeling that Adcal is D3 with Calcium and just 800 IU's of VitD daily. That sounds a VERY low dose. A maintenance dose is around 4500/5000 IU's - I was taking 10,000 IU's now 5000. When taking VitD - calcium uptake from foods is increased - so not really necessary to be taking additional calcium. It is often suggested on the Forum that you also take VitK2 MK7 which directs calcium away from the arteries and into the bones and teeth. Calcium build up in the arteries is not good

Did you click onto the link I gave you ? - go on !

Buying your own VitD3 is not expensive - and if you buy the gel capsules on-line with olive oil as D3 is fat soluble. Natures Best is one brand - there are others of course.

Remember to ask for copies of all your test results - they are legally YOURS !

[puncturedbicycle]

Based on no evidence (just a thought) I wonder if levo doesn't suit you. I was very breathless and weak on levo alone and I wonder if some of your breathing issues could be down to a symptom called air hunger. I don't know why levo affects some people this way, maybe if your body is not processing it correctly it isn't relieving these awful hypo symptoms.

I will never forget going away for the weekend when it was my partner's birthday and having to hold on to his arm to walk, pausing to get my breath etc. I was only about 42 or 43 but I felt about 90. I had never had that symptom so severely before or since, but it was terrible.

My thoughts are that if you're on a higher-than-usual levo dose (we all need what we need and 200 is not unheard of but it is on the high side) and you're still feeling hypo that you've been getting dose increases but no one has bothered to scratch the surface and find out if you need something more than just more levo.

[chibby1 in reply to puncturedbicycle]

Hi puncturedbicycle Thank you for your reply , Wow 12 yrs is a long time if levo don't suit me . But going to look into it all , try to see our doctor or a doctor next week as ours only works 2 days per week . Never had a fag in my life and played sport right up till 12 yrs ago when all my problems started . If as you say it could be levo that makes me breathless changing them might help me lots . Think I need to ask lots of questions at our Practice starting ASAP . Been on 200 from day one and by what I have been told on here taking them wrong , washed down at night along with all the others with a mug of tea . Thank you again been more help put forward on here than I have received in 12 years from our Practice . Have a lovely weekend whatever you get up to Chibby1 .

[marigold22 in reply to chibby1]

Chibby1 - I've had hypothyroid for 35 years and only learnt what I know from this amazing site.... so many informed, friendly and helpful people. I just want to warn you that if you question your GP, he/she will not know the answers, if it's about hypothyroid. They really don't have the knowledge. This place is the best place to get the best answers.

Good luck

[chibby1 in reply to marigold22]

Thank you for that marigold22 Yes I understand that they don't have the Knowledge but just to put me on tablets and leave me , if as i'v been told the levo does not agree with me 12 yrs is a long time . But yes this site sounds amazing . Have had so many great tips in just one day , Chibby1 .

[marigold22 in reply to chibby1]

I was diagnosed hypothyroid in 1981 and was on levo for 14 years and felt Krap. Found a private doctor in Surrey and he told me i couldn't convert the t4 (Levo tablets) into the usable thyroid hormone T3. He changed my medication from T4 to T3 (liothyronine). I have a genetic fault, as many here do, where my body can't convert T4 into T3. I know it's complicated. However there is an ongoing problem now with the T3 (liothyronine) medication where it's so expensive that the NHS is starting to stop it from being prescribed. If you are interested in finding out about this problem with the NHS, put 'T3' into the search box. Or post a new question. Private message me if you would like to ask any questions.

[chibby1 in reply to marigold22]

Thank you marrigold22 for your help . I have been given loads of great advice on here . I am jotting things down and trying to take it in . You may think we are from the stone age up here in darkest Yorkshire but all this T3 and T4 is new to me . I have always gone to doctor when ill , been given tablets and got better , end of . But these past 12 years have been the pits , taking so many different pills . But I intend to get to the bottom of all this as really been down for far too long now . Thanks again and have a super weekend , roll on SUMMER and a sit outside . Chibby1 .

[Marz]

So how did things go with your GP - think it was Monday ? Any luck ?

[chibby1 in reply to Marz]

Hi Marz Got to go this next Friday to have my bloods done , our doctor only works Thurs/ Fri each week , but a nurse is taking my blood all been well . Been a difficult week with things going wrong plus not feeling too good does not help . We lost our Motability car a few weeks back in the change over from DLA to PIP and just got to know that our appeal has failed to . Think the blue badge will go too as I will not be on the high level of Motability any longer . Been ill for 12 yrs and now that I am at my worsed we are loosing out on things due to cut backs . But I took your advice on taking my medication , cut supper out and take my levo last with water and a gap between pills . Lap top been playing up tonight must be some leaves on the line !!! , this week can only get better , hope you are having a lovely week . Our weather been good it was 16 degrees today that's good for us here and its only early April . Chibby1 .

[Marz in reply to chibby1]

Sorry to hear about the car. Lets get your health back on track - ( without leaves !! ) - and who knows you maybe able to have your own little runaround ! Have you made a shopping list of the tests needed ?