I need educating

[Lavinia22]

I've got an under active thyroid and currently on 400mg of levothyroxin per day... this has been going on for years... I'm now 46 and I've decided that I need to help myself..so looking for info and what I could do to help myself..

[greygoose]

Hi Lavinia, welcome to the forum.

The first thing you absolutely need to do is get copies of your lab test results. If you live in the UK, it is your legal right to have copies. You need to know exactly what was tested, and exactly what the results were. Without that knowledge, you cannot move forward. It's likely that your doctor knows nothing about thyroid - very few of them do - and hasn't been doing the right tests. But, I have to say, right off, this is a long slow business, there are no short cuts, you need to take things one step at a time - and the first step is the blood test results and understanding them. Post them on here, with the ranges, and people will help you understand them, and tell you what you need to do next.

And, I have to say, you are probably going to be overwhelmed with responses talking about nutrients and adrenals and goodness knows what else, and you are going to be totally lost! lol So, just ignore them and concentrate on the first step : the labs! We'll get to all that other stuff later. OK?

[Lavinia22 in reply to greygoose]

Greygoose I'm speechless at the numbers etc everyone is putting up. I had bloods done 2 weeks ago so will call at the surgery tomorrow and ask for them. Thank you x

[greygoose in reply to Lavinia22]

You're welcome.

[jgelliss in reply to greygoose]

greygoose once again is on the mark . You must know your lab results before you make your next move . It's like shooting in the dark . Your lab results are telling .

I hope you get your lab results real soon and post them .

[Clutter]

Lavinia22,

First thing to do is to obtain your recent thyroid results and ranges to check whether you are optimally dosed. Ask your GP receptionist whether thyroid peroxidase antibodies have been tested to confirm or rule out autoimmune thyroiditis (Hashimoto's) causing hypothyroidism.

400mcg is a high dose. Have you had a coeliac screen to see whether you have gluten-intolerance causing malabsorption of Levothyroxine.

The best way to educate yourself is to read posts on the forum and on thyroiduk.org.uk but the thyroid UK site is down for maintenance today so you'll have to wait until tomorrow.

[Lavinia22 in reply to Clutter]

No I've never had any other tests done. I've been on this high dosage for years.. extremely over weight which I'm working very hard to reduce.. I have stress/anxiety issues which I'm also dealing with.. it's time to take charge so I will appreciate any help I get

Thank you

[Clutter in reply to Lavinia22]

Lavinia22,

Ask your GP about the coeliac screen. Or just quit eating gluten and see whether that makes any difference to your weightloss. If gluten intolerance is causing malabsorption you may find your Levothyroxine dose needs reducing after a while.

[Lavinia22 in reply to Clutter]

Wouldn't that be an easy fix.. I've often wandered if the gluten I eat causes my ins problems.. do you really think the three are related or possibly could be 😯

[Lavinia22 in reply to Lavinia22]

*IBS not ins

[Clutter in reply to Lavinia22]

Lavinia22,

Gluten can certainly be causing IBS and yes, the simple fix is to stop eating everything that contains gluten.

[Lavinia22 in reply to Clutter]

Clutter anything is worth a try I wonder if I stopped for the month of August if I would see a difference... I can feel a little bit of a plan coming on.

[Clutter in reply to Lavinia22]

Lavinia22,

You might have withdrawal symptoms for a few days. It shouldn't last. If you don't feel any improvement in IBS after 4 weeks you may as well reintroduce gluten.

[Lavinia22 in reply to Clutter]

Well I'm going to keep a detailed food diary and go back to basics xxx

[Venicefan in reply to Lavinia22]

I had IBS all my life. I went gluten free in April 2016. I no longer have IBS but it took 6 months for me to realise the IBS had gone. It takes about 3 months on a gluten free diet for the antibodies to clear from your bloodstream, and it takes time for the gut to heal, so don't expect instant results with respect to the IBS.

If you are gluten sensitive and eat gluten after being gluten free for a few weeks you may well get a very intense reaction to it because the antibodies are still in your bloodstream.

[SeasideSusie Remembering]

Lavinia22 400mcg Levo is a rather high dose. How do you feel?

Have you got any blood test results to share, always a good place to start and means members can offer guidance where they see a problem? If you are in the UK you are entitled to your results under the Data Protection Act so if you haven't got them ask your surgery for a print out, make sure the reference ranges are included. Thyroid tests plus vitamins and minerals would be good eg

TSH

FT4

FT3

Thyroid Antibodies

Vit D

B12

Folate

Ferritin

Maybe also

Full blood count

Iron panel

Haemoglobin

Vitamins and minerals need to be at optimal levels, not just in range, for thyroid hormone to work. If you are still symptomatic then it's possible your Levo isn't being absorbed properly and low nutrient levels can cause this, as can low stomach acid and other gut problems.

There's a lot of information on ThyroidUK's main website (this is their forum) thyroiduk.org.uk/ although it is down for maintenance at the moment.

If you want some reading then Dr Barry Peatfield's book Your Thyroid and How To Keep It health is a good read and written in a way patients can understand, Kindle and paperback amazon.co.uk/Your-Thyroid-H...

[Lavinia22 in reply to SeasideSusie]

Seaside Susie

Thank you for the reply and I will try find out as much as I possibly can tomorrow I live in Scotland.. I did speak to my go about being exhausted all the time, forgetful, starting a sentence and half way through total blank as to what I was saying... I'm not sure how much of my health problems are related to my thyroid.. I normally ask and I am told that the results where ok ??

Thank you for taking the time to reply

[ljk1 in reply to Lavinia22]

Hi Lavinia22 and welcome! You will be amazed by the depth of knowledge available here! The problems you mention are typical of being hypo and most of us have had similar,there are lots and lots of symptoms, there are often contributing causes such as adrenal problems, low vitamin/mineral levels, gut problems..... It can seem endless! But everybody will help you 😊

[Lavinia22 in reply to ljk1]

My goodness it will seem endless ... I live on a small holding.. i have kicked my butt and made a real effort this year to try and eat as much of our own produce as we possibly can.. which will have been a drop in gluten.. it's time to get fixed and take my life back or as much of it as I possibly can...

[Hidden in reply to Lavinia22]

Lavinia,

Has any doctor put you on 400 mcg of thyroxine...I am wondering because, in my experience, most doctors start to freak out as soon as you take more than 150 mcg daily...not judging you, just trying to figure out what is going on here.

My guess would be that, if you take 400 mcg of T4 daily and are still suffering from many classical hypothyroid symptoms, you are not converting enough T4 to T3. T3 is the truly active hormone, but is only produced in small quantitates by the thyroid gland. Most of the T3 the body needs comes from the conversion of T4 (an inactive storage hormone with a long half-life in the body). However, in, many hypothyroid patients, that conversion does not work optimally. It can be impaired for many reasons: vitamin/mineral deficiencies (B12, ferritin, iron, just to mention a few) as well as low cortisol, most often caused by tired adrenals. The latter condition is known as adrenal fatigue and is actually quite common in people having lived with low thyroid function for years, although most conventional doctors have no clue what it is. The thing is that adequate cortisol levels are required for the conversion of T4 to T3...as you can see, many things have to work optimally in order for you to fully recover. However, if you have not improved on as much as 400 mcg of T4 daily, my advice would be to start looking for alternative treatment methods. First of all, you need to have your free T3 levels checked, as well as your reverse T3 (rT3) levels; if you take a lot of T4 that the body cannot use, it will be converted to reverse (inactive T3) which blocks the action of free T3 (the truly active hormone on cellular level).

Is there any way you could have these tests ordered from a private lab if your doctor won't order them...?

[Lavinia22 in reply to Hidden]

I started about 10 years ago on 50 mg and by the end of a year and a half I was at 400 g.. I was told by the gp at the time that they wouldn't put the dose any higher.. I continuously try and just keep going I'm going to ask for detailed results tomorrow and then make an appointment to see my gp to discuss. I've had so much info tonight loads of food for thought 😄

[Hidden in reply to Lavinia22]

I know what you mean However, as a patient formerly on 200 mcg of T4 daily without much effect, I honestly don't think T4 is enough for you if you take twice that much and still display many symptoms of hypothyroidism. Now, time to digest all the information and consider your next move

[Lavinia22 in reply to Hidden]

My next move is to try and get detailed results and try the gluten free for a month too.. xxx

[DippyDame in reply to Lavinia22]

Has anyone mentioned ME/CMS or Fibromyalgia? Fatigue is a highly significant symptom of these conditions.

Re Levothyroxine...I suggest you mean 400mcg/micrograms rather than 400mg/milligrams. A common mistake but potentially a dangerous one! You need to have bloods tested...400mcg is a hefty dose!

It's possible that your thyroid diagnosis is in part a red herring!

Self educate by way of the following but be cautious of some of the advice offered on line!

fmauk.org

actionforme.org.uk

Good luck!

[Hidden]

Wow, with 400 mcg of Levo I'm really really curious to see what a good set of labs will reveal (i.e. Nutrient levels!!) without optimal levels of B12, Vit D, folate and ferritin we can have an uphill battle converting our dosage - these nutrient levels are IMO the "canary in the coal mine" - and reveal so much info. (We commonly have malabsorption issues, food intolerances etc). An example might be finding low Vit D levels, or B12. (See links below) These can manifest in huge ways as far as ongoing unresolved symptoms even as our dosage creeps up and up. Been there! It took finding this forum before I discovered my low ferritin levels, and in turn I resolved to take the reins with my health care. A typical Gp is woefully ill equipped to treat thyroid - and with your dosage sooo high I suspect you have fallen between the cracks! Glad to see you are ready to make changes! X Rusty

hypothyroidmom.com/92-of-ha...

stopthethyroidmadness.com/b12/

[Lavinia22 in reply to Hidden]

Thanks Rusty I've been kicking myself I should have done all this sooner but at least I will know where I stand.. what a great place and so much help

[Hidden in reply to Lavinia22]

You go, Lavinia! 🙌

[Lavinia22 in reply to Hidden]

I'm feeling impowered xx

[SlowDragon Administrator]

If you have high Thyroid antibodies this is autoimmune thyroid disease also called Hashimoto's

With Hashimoto's very very many of us find strictly gluten free diet helps significantly

See The Thyroid Pharmacist website and her thyroid secret video series on YouTube

Lots of other websites looking at causes - usually poor gut and gluten

Amy Myers, Chris Kresser, scdlifestyle.com etc etc

Thyroid Uk is the home site of this support group

Medics often have little idea about gut & gluten connection to Thyroid

[judburke]

I agree with clutter about the possibility of a gut absorption problem such as Coeliac as 400 thyroxin is very high. Some medicines such as PPIs for stomach acid can also cause absorption problems for thyroxin and vitamins. My advice would be to see what your vitamin results are and post them on here for comment. If they are low this could be an indicator of Coeliac. To be tested for Coeliac you need a blood test and you need to be eating gluten properly for 6 weeks for the test to be effective. Have a look at the Coeliac Uk website for symptoms and testing. They are very helpful if you call them. FYI doctors are now linking the fact that many of us have Thyroid problems and develop a second problem such as Coeliac. My recommendation is to hold off going gluten free until you get your results and then ask Dr for Coeliac antibody test.

[judburke in reply to judburke]

PS not all coeliacs have toilet problems or sudden weight loss. Some of us have Silent CD and the only noticeable symptoms are low vitamins and minerals and generally feeling awful

[silverfox7]

One early lesson to learn is that often when a doctors says your results are fine or normal it means they are in range but that's not saying it's the level that is right for you!

Also going up so high in such a relatively short length of time possible means that he tests were may be taken too close together or you did t have sufficient time to settle on each dose. That's down to him, not you but you may well have rushed passed where your best level would be. Often the symptoms of being over can be very similar to being under. So if you have any earlier results then could be useful to see them as well if you can give the dates as well as the ranges. The ranges are important as they differ from lab to lab so we won't be familiar with yours but itssbsre in the range that is important which once we know them we can work it out.

You have already done the first step to wellness by posting so welcome and well done!

[pennyannie]

Hey there, it's a steep learning curve, but doable - one step at a time - knowledge is empowering -this site is amazing -

the relevant blood tests are imperative - though sadly not normally taken - Why ?

" in range " from a doctor doesn't mean what you thought - Why ?

It'll take time, read all you can, welcome, you're in good hands here, am 6 months into my learning curve and slowly, slowly, things fall into place and ital. makes sense -

Best wishes from the other end - of the country !

[Hidden]

Hi This site has helped me enormously I am so pleased to read that your

trying to help yourself to, that's great news!