First post. I'm desperate to find some relief

[sunrising]

Hi

I have Hashimotos and took Levo thyroxine for several years then became very unwell. I later identified that I do not convert T4 to T3 so I managed to get a combo of T4/T3 but still felt ill and got really spaced out after taking T3. I'm now trying NDT but still feel unwell (head pressures, lethargy, bone and muscle pain, severe weight loss). I also have osteoporosis and not sure if this is related. I had a private adrenal stress test and my adrenals are very low in the reference range so I'm taking one tab of adrenal cortex (50 mg) per day. Does anyone know if this is enough. I'm anxious that too much adrenal support will harm my bones further. Also, on NDT, I have lost more weight and I'm currently very underweight. I get very anxious and panicky and shakey especially in the mornings and I do not sleep well due to my symptoms. I've been going around incircles for a couple of years now trying to fix myself as docs have just labelled me as depressed but I know it's more than this as my bloods show high T4 and low T3 when my tests come back. My body feels like it is crying out for something but I don't know what. I used to take 125 mcg of Levo but I just can't tolerate it on it's own and I know that my T3 was low but can't understand why adding T3 makes me a little 'spacey'. I've often felt suicidal because my symptoms will just not resolve and I know there is more to this than depression. I have very high levels of autoantibodies if that's any help in diagnosis. I'm wondering whether to increase Cortex but unsure because of my bone pain. I'm on 1 1/4 to 1 1/2 grains of NDT and can't go any higher at the moment.

Does anyone know of a good naturepath or homeopath doc in my area - I live in Worcestershire.

I'm sorry to be blunt and to the point with my report but I'm so exhausted, it's hard to compose a 'pleasant' introduction and first post so I do apologise - it's not my normal nature.

Thanks to anyone that can help

[Moggie]

Have you very had a reverse T3 test done.

Moggie x

[sunrising in reply to Moggie]

Yes, I did and it came back within the normal range although towards the top end of the normal range

Thanks xxx

[galathea]

How bad were the adrenals? Did you do a saliva test? Are you taking anything for the osteoporosis? It may be that the thyroid has not been making calcitonin, which stops calcium leeching out of your bones, and into the blood stream. NDT contains calcitonin so it might help. Not sure about the adrenal suppliment, ity doesn't sound like much. Most people seem to persevere with. Nutri adrenal extra and also the c3tm method of taking t3 when the adrenals need it, in the middle of the night.

I took cortisone in a split dose for a couple of years which sorted my adrenals out. As it allowed me to get on a decent dose of NDT. ( 4 grains)

If I was you, I would monitor temperature 3 times a day and plot the average, as per drrind.com so you can figure out if its adrenals or thyroid causing the problem. I plotted mine all the time and it was great to see the graph change as I got the meds right.

You're instantly forgiven for the direct tone of your post, many of us know what it feels like....

drrind.com/therapies/metabo...

[sunrising in reply to galathea]

Thanks

I did the saliva tests:

Sample 1: 15.7 (12-22)

Sample 2: 6.5 (5-9)

Sample 3: 3.0 (3-7)

Sample 4: 3.5 (1-3)

Do these results look bad to you?

I'm taking calcium, magnesium, Vitd, Vit K and boron for bones. I tried the bone prescription drugs and have suffered bad bone pain ever since - plus arthritis.

Maybe I should increase my cortex, just a little concerned re: bones.

My temps during the day do not fluctuate too badly.

I'm losing more weight on NDT so don't know what to do even though the calcitonin aspect sounds good.

Doh, I'm really struggling with this disease.

xxxxx Thank you

[yorkshiregirl44 in reply to sunrising]

Could your arthritis be causing some of your problems.... seronegative ra can cause weught loss and a feeling on being unwell,whereas osteo causes pain without the malaise. Just a thought .....

[sunrising in reply to yorkshiregirl44]

Thanks for this. I was check for RF and it came back negative

[Hennerton]

Welcome Sunrising. Not a blunt post. We have all been there and in my case I, like you, am still trying to find the perfect combination of meds.

It is good to hear of someone else who loses weight. My new endo asked me if I might be anorexic!

I am not familiar with taking adrenal supplements so cannot help there but I am wondering if your shakiness is due to your adrenals and/or to low iron. I was found to be anaemic last year, after having trouble taking T3 only. I am on a Spatone supplement but it is very slow to improve. I took T3 only last year for 9 months. It is good if you do not convert well but eventually I moved to the T4/3 combo. It might be something you could consider and there are many people on this site who may reply to you, who are very happy on it but obviously no good for you if you find T3 hard to take.

I imagine it is also the T3 element of Armour you are having trouble taking. If you ask your GP to check your iron, do ask if she will do a full iron panel, plus Ferritin, Folate. B12 and Vit D. These may be low and can cause issues with processing thyroid hormone. It is often the case with people who have been struggling for years with just Levo. Do hope you find help soon and I am sorry I do not know of a homeopath or naturopath near you but some one else probably will.

[sunrising in reply to Hennerton]

Thanks and I'm glad that I'm not the only one who is skinny (thought I was a freak) but I don't wish it on you either - it's horrid.

I've had all my vits checked but may ask for iron again if this could be a prob although it was OK last time.

I've tried everything I can think of but maybe I just need to increase the adrenal cortex. T3 has been a little easier to take since adrenal sup but I'm just struggling in general with whatever I take. I might go back to T4 and T3 and see if it's any better since taking adrenal cortex. Docs don't know I'm taking NDT - I just got so desperate for some relief and still am - nothing seems to work very well and I'm very concerned about my weight loss.

I hope that you find your perfect combo soon.

What's spartone - is it iron sup?

xxxxxxx

[Hennerton in reply to sunrising]

Yes, Spatone is iron rich liquid from an ancient spa somewhere up North! Supposed to be better absorbed than tablets. I buy it in a health shop. You mix it with fruit juice, as the Vit C also helps with absorption.

Re the iron, I have been having serum iron checks for years and always told it was fine. Only when I insisted on the full works of iron saturation and TIBC and ferritin did it show that I was actually anaemic. I then asked my GP to read out all my iron levels over the past ten years and guess what, they were all either at the very bottom or under the reference range! That is what they call "normal" so just ask for results with ref ranges and check for yourself.

Hope you get some success soon. xxx

[sunrising in reply to Hennerton]

Thanks very much for your help. I think I will ask for iron saturation test although I'm not sure if the docs will oblige - I think they are fed up with me complaining but what do they expect if they don't fully understand how to treat thyroid disease. Not sure what TIBC is though!!!! xxx

[Hennerton in reply to sunrising]

TIBC is total iron binding capacity. Don't ask me how it works though! x

[Aurealis]

It's really tricky to get the balance right. We're all different but the symptoms you describe I get when T3 is too high. I don't find that the tests necessarily help. Try to adjust it instinctively when they let me. I'm only really well if I get dose right, eat well, exercise and avoid excess stress. Don't know if any of this is any help to you. I'm on Levo plus T3 so can adjust both, haven't tried NDT.

[sunrising in reply to Aurealis]

Thanks, I feel sluggish on NDT and can't raise so there must be a prob - quessing adrenals. I do suffer lots of stress as I have a disability prob after suffering an accident so exercise is very difficult for me. I used to be very active until my accident so I'm guessing that stress is a big one for me but who knows - all I know is that it's hard to find an effective combo and I don't know why. Trouble with T4/T3 combo is that I don't convert T4 very well and am too scared to try the T3 only route really.

My bones hurt loads and I don't know if this is thyroid related or not!!!!!

xxxxxx

[Hennerton in reply to sunrising]

Just to let you know there is a very good book by Paul Robinson called "Recovering with T3 only" it is what I used when I was on it, he is extremely cautious so you do not have to worry about that aspect but he does emphasise the importance of adrenals being optimum, along with all the iron etc. Maybe not right for you yet, until adrenals are stronger but he also has a method of helping adrenals by using T3. Just a thought... xx

[sunrising in reply to Hennerton]

Thanks for this - yes, I have the book but a bit too scared to go T3 only although, I'm going to try and reduce T4 and increase T3 and see how that goes.

How did you find T3 only and are you still on T3 only or combo?

x

[Hennerton in reply to sunrising]

I am on the combo now, as I eventually found T3 only gave me a few effects I did not like, such as tight chest and a burning feeling. Had that all checked by heart consultant, who was perfectly happy with my being on it and thought the problem was muscular.

What it did do, I think, (and I was also under Dr Skinner) is help me to understand more about taking medication and not be fearful of it. If one is sensible, takes temperature and blood pressure regularly and keeps notes every day of doses taken, it is not the dangerous hormone that doctors seem to fear. Nevertheless it is not a "take and forget" therapy until the right doses are worked out, so time has to be given to getting it right.

At the moment, and it is early days, I seem to be converting T4 to T3, albeit a bit slowly. If it ever happens that conversion becomes a problem again, I would happily go back on T3 only. x

[sunrising in reply to Hennerton]

Thanks so much for your personal experience. I'm glad you have said these words because I'm adjusting my dose somewhat at the moment and it does feel a little scary 'doing my own thing' but I really feel that I need to experiment a little until I (hopefully) find some relief.

Have you ever experienced bone or muscle pain as I'm trying to fathom out if my bone and muscle pain is thyroid related or not as the case may be xxx

[Hennerton in reply to sunrising]

Yes, I am sorry to say, I have bone, muscle and joint pain most of the time and in a way, this was part of my problem with T3 only. Dr Skinner believed one should keep increasing medication until symptoms eased but my bone and muscle pain did not go completely, yet I felt I could not go on and on increasing the dose. I am not sure what the answer is and even now on the combo, I still have pain. Sorry I cannot be more positive! My new endo is more traditional and after my next blood test, if he is happy with the results yet I am not pain free, he said he would explore other reasons. Hope you find the increases help you. x

[sunrising in reply to Hennerton]

I've not heard any0ne else complain of bone pain so I wonder if this problems of ours in thyroid related or otherwise. Regardless, I hope that your new endo sorts it out for you. Would you kinly let me know the outcome as it may shed some light for me too. I did actually take bisphosphonates for 7 months (much to my regret) although |I stopped these nearly 18 months ago and I've often wondered if it it these drugs or the thyroid causing me probs. xxx

[Hennerton in reply to sunrising]

I know nothing about that particulars drug. What is it for? Will keep in touch but I am not very hopeful of anyone being able to identify what causes the pain.

[sunrising in reply to Hennerton]

It's a bone drug - supposed to help stop losing bone for those who have low bone density but now I'm wondering if it has damaged my bone remodelling process as all of my hurt

[Marz]

...as you probably know auto-immune thyroiditis - Hashimotos - is the most common form of thyroid illness throughout the world. All auto-immune issues start in the gut with one problem or another - so healing the gut is so important. Being gluten free could be a start. I was diagnosed with Crohns some 40 years ago and Hashimotos eight years ago. My journey to wellness has been a long one and at 67 I am still learning and tweaking !

There has been lots of good advice on this thread - but I'm sure you realise that it all takes time to feel well with Thyroid issues. The longer you have been undiagnosed and under treated - the longer it takes for you to be completely well.

Wishing you well soon......

[sunrising in reply to Marz]

Thanks, I would say I'm 90% gluten free. Have you any advice on how to treat gut issues? I limited my diary, keep sugar fairly low and avoid gluten mostly. I eat fairly well avoiding 'rubbish' food

[Marz in reply to sunrising]

...sounds good and as if you are on your journey to well being. We are all such individuals and different things work for different people. Keeping the body alkaline is also quite helpful - and there are websites that will tell you which foods are acid and which are alkaline. Lemons are alkaline/neutral !

Kefir is good for balancing gut flora too....

[sunrising in reply to Marz]

Thank you, I'll get some Kefir too xxx

[shaws]

Yes, we understand desperate and the feeling of hitting a brick wall. This is a link re mistakes some of us or doctors make re taking thyroid gland meds:-

stopthethyroidmadness.com/m...

A link re supplements - Vitamin E is particularly important plus minerals. Vitamin C helps to convert.

This link may be helpful if you have hashimotos and the pharmacist is herself a sufferer.

thyroidlifestyle.com/

[sunrising in reply to shaws]

Thanks very much for the links - most appreciated. STTM has reinforced my need for adrenal support., I'm not really sure how much support I need considering my results. I have just increased adrenal cortex to 2 tabs (50 mg per tab). Going to ask GP to test iron again (if he will oblige)

[sunrising]

Thanks. Ferritin was 90 and all other vits were in the top end of the range when I was last tested. However, zinc was low so I'm supplementing now so it could still be adrenals. Appreciate your advice thanks.

[Ljw61]

Hv u ever looked into Dr. Brownstein's thyroid book? I was experiencing calf pain as well as anxiety depresdion & foggy thinking. I started taking iodine & honestly it has made a WORLD OF DIFFERENCE for me!!!

[sunrising in reply to Ljw61]

Oooh, that's interesting - I was under the impression that iodine should be avoided. Do you take kelp or an iodine supplement - how much do you take? xxxxx

[PinkNinja in reply to sunrising]

Iodine works for some people, particularly if they are deficient. Iodine is used for making thyroid hormones so a supplement can help in those low in Iodine. For those on Thyroid medication, Iodine often isn't needed.

However, in some people, Iodine can cause a nasty reaction. It seems to mainly affect those with autoimmune thyroid disease, as I understand it. If you decide to try Iodine, go slowly and watch for side effects. Hopefully it is something that helps you but bear in mind it could make things worse.

An increase in Iodine levels can also have an adverse effect on conversion of T4 to T3 so be aware of this when you start talking it.

I hope you find the solution that works for you

Carolyn x

[sunrising in reply to PinkNinja]

Hmmmm, I have Hashimotos so maybe it's not a good idea and I definitely do not convert well at all so all things considering maybe I should avoid it. I do have a mineral supplement with a small amount of iodine in but I only take this supplement very occasionally because I've heard it can have adverse effects. As I already feel like an adverse effect within my whole body, it is often quite difficult to know if anything in particular has caused me a problem. It would be so much easier if I felt normal most of the time but I do not unfortunately - doh xxxxx Thanks for your advice

[sunrising]

oh great; I'll get some xxx