Hi everyone, firstly I'm so glad to have found this website..there is so much helpful advice and it's very non judgemental too so thank you, and il and try and keep this as short as I can...
I was diagnosed with M.E. /CFS and fibromyalgia 12 years ago after falling ill with H pylori.
My maternal grandmother, my aunt and my mum all had Underactive Thyroids and other autoimmune disorders such as Rheumatoid Arthritis..
Whe I first got ill I lost nearly two stone in eight weeks and suffered from panic attacks and anxiety and lots of trips to A&E frightened to death wondering what was wrong with me.. since then I have put that back on plus another two stone and feel absolutely dreadful and not getting anywhere and making any improvements with my health. ..anyhow I've tried all sorts over the years and I've told my GP it's my thryoid, I'm just like how my mum was (she died aged 61 lung cancer so it's hard not being to ask her advice) but my thyroid bloodwork panel still comes back normal every time it's been tested (3 times).
Sooo got a recommendation from a friend who had seen a private GP who specialises in thyroid and has helped her and her daughter and they are doing great so I saw nine ans he was very thorough, and based on my strong family History and symptoms plus knowing that I'm having low results in relating bloods he order a full panel plus the antibodies tests. He said he would treat me regardless of results based on what I've told him as he says GPs need to listen to their patients more based on how they feel and family history too!
I got the results and in respect of the Thyroid panel it's a difference language to me and I don't understand it at all! He says that I have hashimotos based on everything plus underactive thyroid, my levels need to optional and my TSH is too high? I've had low ferritin for years and my doc keeps giving me ferrous sulphate which I hate and because i now have fibroids its worse so i was expecting a bad result and he's giving me an iron jab which my gp wouldn't so I'm happy about that. I'm always gong to have B12 jabs again because I take PPIs for tummy acid and it reduces your levels plus I'm gong to get my Vit D up and folate and I know they all have to be optimal levels.
I started on the 50mg Levothyroxine 3 days ago and he will monitor me and gradually increase. Day 3 and I feel like I've been hit by a bus and I'm in agony!
The question is, I'm desperate..but am I stupid? I never accepted the M.E. diagnosed and just knew I was being affected by my Thyroid..I get obsessed that I need a simple negative/positive blood result to prove whats wrong because I've lived without one for 12 years ! Have I got a savvy switched on private GO who has listened and says he wants to help (he is lovely) it is he being irresponsible treating me based in these results! Sorry for long post im so tired of being ill and have a gallbalddder problem and large ovarian tumour (Benign) to deal with too and I'm so fed up. X
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Myonlysunshine
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Oh my gosh! Those nutrients are dire! But, not surprising as you say you're taking a PPI - although, considering you are hypo, your problem is more likely to be low stomach acid, rather than high stomach acid! Ask your new doctor about that, and see what he says.
Your antibodies are actually negative on this test. But, one negative test doesn't prove anything. It certainly sounds as if you have Hashi's.
In any case, your TSH is over 3, which means you are hypo. And your FT4 is very low. So, he is right to start treating you.
It would really help people give an opinion if you post the actual results. But, at a guess, no, he isn't. As soon as I started reading, I knew you had Hashi's, and that the other 'diagnosis' were just a get-out by ignorant, lazy doctors. Anyway, post your labs, and let's have a look.
Thanks so much Greygoose I'm actually crying..I'm so desperate for something to be able to be treatable and because I dont really undestand the lab results I thought it was another possible but not definite. He also wants me to go gluten free which I know is good advice. Thanks again 👍🏻
Those vitamin levels are dreadful, so improving them will definitely help.
So if you have B12 jabs, you probably also need to take a good B complex as well.
Read lots of posts - especially SeasideSusie replies on vitamins
Only ever change one thing at a time or you won't know which is helping
There's no vitamin D test result here - you can do this as simple postal test - vitamindtest.org.uk -£28
Very likely for vitamin D to be low too. Plus magnesium is likely low due to PPI's. Magnesium works with vitamin D. Lots of us who are hypo supplement magnesium anyway. Calm vitality magnesium powder is cheap and easy to use.
Hi there Slow Dragon and thanks for your response! ..I'm going to ask the my NHS GP for BL12 loading doses again had them a few years back after a low of level of 217 , the GP didn't even know that PPIs can affect the absorption of BL12 🙈I starting self injecting once a week after that as they wouldn't keep treating me..I then lost my way doing them due to feeling no better and my son wasn't well at the time either..my Vit D is always low was originally around 17 so I researched and started D3 5,000iu daily for 8 weeks then every other day with Vit K, and I take a Vit B complex too..I also take 400mg magnesium sulphate nightly which helps aid my sleep, cramps and restless legs..my diet could be better due to the fatigue still flooring me I tend to snack on the wrong food and ended up relying on sugar too much..I have lots to do myself and I will do bit by bit and keep notes of progress ..the bloods were done by 'The Doctors Laboratory' xx
Sounds like you are well aware and doing lots of good things
When taking vitamin B complex (or any supplements with biotin in) remember to stop 3-5 days before any blood tests as biotin can falsely affect test results
Are you strictly gluten free? Soya free too including soya lecithin
Also avoid fluoride toothpaste
More likely you actually have low stomach acid- lots of posts on here about how they mix low and high - virtually same symptoms- very different treatment
But stick on PPI's at the moment- you can't change too many things at once
Getting vitamins Better, going gluten free and getting Levo on good dose will help improve stomach acid anyway
Hi Slow Dragon! I've just had a read about low stomach acid and it's interesting that it may be that, I'm seeing the private GP tomorrow so will aks him..and wow the toothpaste ss really even realise that!
Your Ferritin is below range - so that could also be a cause of RLS. I would suggest a FULL Iron Profile and FBC to ascertain anaemia so it can be registered on your notes ....
Do you always obtain copies of all your results for your own records - if not it is a MUST - they are legally yours !
Hi! Glad you seem to be on the right track. Just a small side note, you might still have cfs/me and fibromyalgia (damn you are unlucky to have both!)- but I will hope with all my being that you don't! I only mention this as I am hypo and suffer from them both still, unfortunately. Although, this post definitely has given me some stuff to inquire / as my doctor about! Good for you for taking your health into your own hands, I wish more of us were like you
Why not post your latest thyroid results with ranges for people to comment - perhaps your T3 is low and part of the problem. Also B12 - Folate - Ferritin - VitD need to be checked and optimal.
Have read your other posts so start a new thread with your results so people can help 😊😊
Sadly Docs know so little about thyroid and nutrition - but hey the people here do.
How much T4 are you taking ? Any other medication ?
Hi Marz! Yes I realised that I hadn't put results on post initially and couldn't find a way to edit the post so I put them in the comments below! Should I do a new post again? I'm taking 50mg Thyroxine T4 for now, with a view to increasing and monitoring the doses over the next few months. In terms of the thyroid, that's the only medication I take so far..thanks for you help! X
Hi Humbug! Yep that's crossed my mind too..I know in any case it's going to take time to get as well as I can and I'm happy with any improvement at this point of my 'journey' sorry I hate that word! I need to wipe the slate clean, get all the right nutrients, eat better and hopefully get the right Thyroid treatment..it also sounds easier written down doesn't it? Its very difficult implementing changes when we are sooo tired and i think non ill people can be judgmental about that, wishing you better health too! X
Having looked st your land I'd say ft4 is low as it's at the bottom of range, also ft3 is low.
B12, folate and ferritin also very low. These really need to get treated as I think ferritin should be 70-90 for optimal thyroid function. Folate should be in top 3/4 of range. If you have b12 injections then they shouldn't retest your bloods.
Just want to mention this... I was dx fibromyalgia, suffered for years but when I started on NDT from thyroxine the fibromyalgia symptoms went, and regular b12 shots have kicked the fatigue into touch.
But you may do well on thyroxine, at least you have a start and you have found a great forum for help.
Ah that's interesting and il keep that in mind! I'm on day 4 of Levo now and feel dreadful, can it be worse before better? Should I even be medicated before my nutrients are so low? X
Give Levo a fair go. Many of fine on it so done post on here! It takes a while to get up to the dose that's right for you and same with supplements. They can take a while to work as well. Nothing works quickly in the Thyroid world so we have to be patient. It can take a while to get used to Thyroid meds and we have to start slowly at a low dose to get used to then do its early days. If you continue to feel bad then it might. E the fillers that are the problem. They are added to the medication to bulk it up and also stabilise it. If you think you may have an allergy issue take an antihistamine one hour before your medication and if that stops the problem you need to try a different brand. Which are you taking T the moment? There is a lot to learn but don't try to do it all at once.
Thanks Silverfox..I know it will take time and not everyone agree with Levo I just wasn't sure at what point I need to think it's not the right treatment, I'm exhausted as it is and I feel like I need to sleep all day now instead of half a day! Thank god my son is back at school tomorrow! I've got into a habit over the years of using a journal for symptoms and changes especially now I seem to be having women's monthly issues too..I'm hoping this will give me a good idea how all the nutrient supplements are working too, I'm due to have iron injection tomorrow the first one I've ever had so that will be interesting to see how it works x
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