Hello everyone, UrsaDee here, this is my first attempt at posting on HealthUnlocked, well here goes,
Quite a few years ago I was diagnosed as having an under active Thyroid, subsequently my GP prescribed Levothyroxine for me, over the years my doseage had to be increased, I take 150mcg of Levothyroxine n the morning before food, I've been on 150mcg for a while now.
Apart from the periodical blood test, nothing else is said or done about my thyroid problem, I still feel very tired, I have sweats, lots of the symptoms associated with with Hypothyroidism, I have spoken to my GP about my symptoms but usually I'm "fobbed off" with comments such as "it's due to the disease you have" I do have other health problems, the worst being a disease called Adhesive Arachnoiditis, I was officially diagnosed as having Adhesive Arachnoiditis in 1990, although the medical profession have known since 1980 I have the disease.
I would be extremely grateful for any advice fellow members may be able to offer, is there a better type of replacement thyroid supplement? Is there any foods to avoid or eat? Any advice will be much appreciated.
Thank you. UrsaDee 😺
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UrsaDee
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Hi and Welcome I am not familiar with the condition AA - sounds painful and so upsetting for you that the diagnosis took so long to be reported to you. Did you have anaesthetic at any time into the spine ? Sorry my mind has gone blank as to the correct name !!
Do you have copies of your latest blood tests with ranges ? If so do post them and then lots of people here will be able to comment and help. It is your right to obtain copies of YOUR OWN tests so you can monitor your health and progress. People who do - seem to progress more quickly I feel.
You could be feeling awful due to the T4 dose you are taking - not being able to convert into T3 - which is the most ACTIVE thyroid hormone and is needed in almost every cell of the body. You mention other conditions too - so am thinking you may have Thyroid Anti-bodies - so have they been tested ? Anti-TPO - Anti-Tg. Hashimotos or Auto-immune Thyroid illness is the most common of thyroid conditions.
When Hypo it is very common to be LOW in the following - B12 - VitD - Iron - Ferritin - Folate - so have those tested and do not accept normal from your GP. Just being in range is not sufficient when you are Hypo and they all need to be optimal in order for your T4 tablet to convert into T3 and work well in your body. They will improve how you are feeling....
Regarding eating plans - of course it is a very personal thing and depends how far you want to take it. If you have any inflammatory conditions then it is good to look at the gut and try to calm things down. The more I read and the more I hear - it is so clear that most health conditions involve inflammation - even heart conditions - so healing the gut is very important. I was diagnosed with Crohns over 40 years ago - so have a little experience in that area !! Hashimotos diagnosed just 9 years ago - so lots of issues in between The way we eat has changed so much over the last 60 years and so has our health...
Please do ask questions and I will look out for your posts....
Hello Marz, thank you very, very much for taking the trouble to answer my post, you've been so helpful.
To date I've never been told the results of my thyroid function tests, apart from when my thyroxine had to be changed or rather increased. I will ask my doctors surgery if they could let me have a copy of the last test results. Please forgive my ignorance, but what do the terms T4 & T3 mean? Nobody has ever explained any of the things you've mention in your message to me, I feel like I'm in a permanent fog, I used to be able to concentrate, but not now, fatigued & TATT make it difficult, it takes me a while to type a simple message.
The last "ailment" to be added to my list is NAFLD Non Alcholholic Fatty Liver Disease, this came to light when I had an ultra sound scan on my stomach.
Because of my disability it's not always possible for me to visit my GP at the Doctors Surgery, so my GP rang me to give me the results of my scan, nothing more has been said or done since then.
Just to let you know Marz & our fellow members, Adhesive Arachnoiditis is caused by numerous things, any invasive procedure to the spine can cause Adhesive Arachnoiditis, Epidurals, Lumber Punctures, Spinal Surgery, even the blood patch they use after doing such procedures, any infection that can pass the blood brain barrier can also cause AA.
I could go on! If any one would like to know more about the disease, there's a great website to visit Arachnoiditis.co.uk you'll find a wealth of information about AA.
I have AA after having a Mylogram done on the 2nd March 1977, that day changed my Life permanently, back in the 70's 80's the contrast agent used was called Myodil, it is an oil based dye, Myodil is very toxic, neurotoxic, this poisonous dye was banned in Sweden the same year as I was born 1956! The mylogram was performed to diagnose a prolapsed disc in my spine, I had a central prolapse at L5. To cut a long story short, I had to have further Mylograms done, in all there were 5, 2 using Myodil & 3 using water based dyes, even the water based dyes are dangerous.
Due to pain & lack of mobility I spend my days in bed as it's painful to be "upright" for very long, I'm now overweight, a sedentary life doesn't help does it, neither does an under active thyroid.
Sorry for going "off track" thank you again for your message. x x x
Am afraid you are rarely told the detail of results - you really do have to firmly ask - plus explanations. I know it is so difficult to focus when you are in pain and poorly....but you will soon get into the habit of obtaining blood test results. T4 is the tablet you are taking for your thyroid - it is a storage hormone and does very little in the body. It has to change into the most AVTIVE hormone - T3. That is needed in almost every cell of the body - cells of the brain/gut/heart and so on. So you need good levels of T3 so it is VERY important to know if the pill you are taking converts into T3. Also the vitamins and minerals I listed above need to be optimal to aid this conversion.
So these are the tests you need - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg: Also B12 - Ferritin - Folate - Iron - VitD. Many of your symptoms could be down to LOW B12 as you can see on the link below. Scroll down for the list
The above website has so much information for you to read when you feel able ...
I'm sorry you are struggling at the moment - however I am a firm believer if we attend to the detail - like vitamins and minerals and optimizing the thyroid treatment - the changes can be amazing. I too have struggled for years and have learnt so much from this forum. You can click onto my name and read the edited version of my health journey. I am still learning and tweaking with this and that. I am T3 only and take a tray full of supplements and weekly B12 injections. Living in Crete makes some things easier health wise as you have to take control and get on with it....
The above video is 90 minutes long - so when you can spare the time have a look. Well worth watching and you will be amazed at the importance of VitD....
Hello Martz, I thought I'd get back in touch to let you know I requested my thyroid function results, I spoke to one of the doctors receptionists & asked her for a copy of my test results, she explained she "would have to run it by my GP" but she thought there wouldn't be any problem.
As soon as I receive my copy of the results, I will "post" them "here"
I look forward to hearing what you think.
I hope you & our fellow members have a great weekend.
Welcome to the forum. Glad you have found us. What would be very helpful is your last bloods and ranges and then we may be able to give advice more applicable to you. It may be an increase in your meds, help with converting from T4 to T3 or suggesting a different type of medication. You say you take your thyroxine in the morning before food but do you swallow with a glass of water and leave about an hour till you eat. Also leave a gap of four hours before eating anything with calcium in it and feeling two how's away from any other tablets or anything with hormones. Let's see if we can improve on what you are already taking as that's less of a battle with GP's who on the whole can be clueless! Too many think that little pill cures all and it's not that simple for a lot of us. We tend to be low in vitamins and they need to be at an optimum level to aid absorption. So if you haven't a recent test result ask your GP for another to include TSH, FT4 and FT3 and ask him also to test Vit D3, full iron panel and B12. Always ask for a printout of your results, you are entitled to them and don't fordet the ranges offer shown in brackets as these differ from lab to lab. There is no charge for this but there may be a nominal charge to cover the paper and ink. Don't be fobbed of by being told they are normal. That usually means they are in range but not Tgat they are optimal or right for you. There is no quick fix as testing and tweaking your dose has to be done slowly as you may well know. What dose are you currently on and do you get the same brand every time? It's best to stick to the one as fillers can vary and the actual amount of the drug as well between different manufactures. It won't be a great difference and they have to be within a range but some of us are very sensitive to even slight changes so its best that we can keep as many things as we can the same so as not to introduce many variables. Ask your pharmacy to supply the same one each time. They may say they have to take what comes, in that case then ask the GP to name the brand on the prescription then they have to get that one for you. When I realised many many years ago this was a problem I asked the pharmacist which one was sent most often then asked for that one in future.
So will be able to help you more when we see what your results are like.
If you can, ask for all your results. This way you can compare and contrast them. You need the ranges, although to be honest as long as you have them for one, they probably use the same lab.
Hi Ursa, well, the others have said most of what is to be said, so...
So, about diet... As Marz and silverfox said, it is most important to get your vits and mins tested. They are usually low in hypos because hypos usually have low stomach acid which makes absorbtion difficult. But they are most incredibly important, and deficiencies could be causing a lot of your problems. Vit C is very important - but not Worth testing for - and should be taken every day. For a start, it will help you absorb your Levo, which can't be bad!
Things like fat and salt are also important. The body needs good dietary fats, like olive oïl, animal fat and coconut oïl. Avoid other vegetable oils - not because the vegetables are bad but because of the processing they go throught to make the oïl.
Salt is also necessary for the adrenals - and hypos need strong adrenals! We're always being told to cut back more and more with salt, but it's bad advice. The whole body needs salt, but especailly the adrenals.
There are certain fruits and vegetable labeled 'goitrogens', which are supposed to be bad for the thyroid. But unless you eat like a rabbit, I shouldn't take too much notice of those. Just get to know your body and it's reactions - that's the clue to getting healthy! - and if you feel suddenly bad a few hours after eating, make a note of what you ate and see if it affects you the next time you eat it. If not, Don't worry, if you do, avoid it in future. Complicated subject, but that's it in a nut-shell.
Marz said to get your anti-bodies tested to see if you are Hashi's, if you are, we'll talk about this again. If not, I'll just say make sure you get plenty of protein. Protein, fat, fresh fruit and veg, basic good eating, really. Avoid processed foods (additives), cook everything from scratch. Avoid sugar as much as possible. Not really good. But you could get coconut flower sugar from a health food shop or Amazon. All things coconut are good for hypos.
Start the day with protein, to support your adrenals. Nothing sweet after 7.0 pm, and no eating after 9.0 pm on a regular basis - that affects your production of meletonine and HGH - and you need all the hormones you can produce! lol
Can't think of anything else off-hand. But Don't hesitate to ask if you have any other questions. Oh, and are you on any other drugs? Look forward to seeing your blood test results when you get them!
Hashi's (Hashimoto's Diseae) is an autoimmune disease where the immune system attacks the thyroid gland. Just having the antibodies can give some people symptoms - although doctors Don't know this. Then, of course, when the gland becomes smaller, it can't produce enough hormone and you go hypo. It's easily tested for but doctors often Don't want to - probably because they wouldn't know how to treat it if you had it! But ask anyway.
Just read about your other problems so I appreciated life hasn't been good for a while. As you say if you can get your thyroid improved it should make you feel better. Let's hope we can all help you along that path. Take care.
I just wanted to add thanks for the information about arachnoiditis - I had a really poor epidural when my first baby was born - took several attempts to get the needle in because all pain relief had worn off (about 7 attempts I think) and I had to have a blood patch afterwards. I suffer from random nerve pain, and been accused of being a drama queen, but it's nice to have a name, even if nothing can be done for it! Woohoo, I'm NOT a hypochondriac!
Hello Mistydog, I'm happy to have been of help but very sad to hear of your problems after having an epidural, the doctor should never have continued trying to site the needle into your back, if he or she were having difficulties they should have stopped straight away. Unfortunately when you're full term there is no way you can "curl" your back as you have the baby bump in the way, the doctor is trying to get into a tight space, only experienced doctors should perform the Epidural, when the needle is inserted the doctor pushes the needle in until the thick dura layer is felt, this can be easily penetrated & the contents of the syringe is emptied into the sub Arachnoidi space, when this happens the epidural has failed & the patient doesn't receive any or only partial pain control & then you the patient is left with an inflamed arachnoid layer, the spinal nerves become inflamed & swollen, they stick together & cause terrible pain & disability.
Please know I'm thinking of you, if you feel you'd like to talk with others who've had the same problems as yourself, there's a fantastic support group on Facebook, it's the same name as the website I told you about, Arachnoiditis.co.uk I've been a member for a few years now, like the wonderful folk here in this group, you'll find friendship & support too.
Thank you. In hindsight you are right, but at the time you just let them get on with it. The problem is that all other anaesthetic had worn off so was in full labour and every time they tried, a contraction came along. I should have been left to give birth really. Anyway luckily it's nothing like as bad as you obviously have but it's good to have a name for it. Hope you can sort your other symptoms.
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I am not familiar with the condition AA - sounds painful and so upsetting for you that the diagnosis took so long to be reported to you. Did you have anaesthetic at any time into the spine ? Sorry my mind has gone blank as to the correct name !!
The way we eat has changed so much over the last 60 years and so has our health...
Thank you to everyone's advice and help, a great forum!!
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