Metabolic Analysis Profile/Balance Issues/Extreme Lethargy - Update on Prev Post

[billyblondehill]

Dear All, 

Thank you so much for all of your very helpful replies - very much appreciated x 

Sincere apologies for the delay in my response - have been dealing with another family issue as well as feeling so 'rock-bottom' with my energy levels/balance issue so haven't been feeling well enough to even fully formulate a proper reply!  I have also been extremely upset over recent medical appts - one of which I was told (by a specialist endocrinologist) that my problem is that I'm now reading too much on the internet and now my own GP now saying that I really should now accept that my health problem is nothing to do with my hypothyroidism and that there is no further testing can be offered to me as all of my tests have proved normal!!!! 

Anyway, I hope to cover all of the main points raised by people in one "consolidated" reply here.

First of all I should explain that I am a 50 yr old female first diagnosed as hypothyroid (underactive thyroid) roughly 15 years ago.  I was fairly lucky in that I was able to get a quick diagnosis as my GP seemed to recognise the symptoms fairly quickly (indeed I have had the same GP for a number of years and had been relatively "stick-thin" for all of my life so even he could see how "bloated" I appeared as well as other symptoms).

Anyway, after the blood tests proved I was hypothyroid, I was prescribed thyroxine straight away (initially was on 100 mcg for a number of years - but in approx 2010 it was raised to 125 mcg thyroxine after my standard annual thyroid blood test revealed I needed an increase).

In all of these years, despite initially feeling better after first being on thyroxine, I have still felt my energy levels have never been the same & like many people on here, still seemed to be suffering many of the symptoms of hypothyroidism (brain fog, constantly feeling cold, extreme lethargy and still gaining weight despite all of my blood tests being 'normal').  I have also had referrals and appts with specialist endocrinologists over the years and had a few other tests which again all appeared 'normal'. (I will list further down my current exact test results).

It was rather unfortunate that during this time I also started to suffer from a gynaecological issue (fibroids) so was having to take medication for that as well (progesterone only pill - norethisterone) and at the time, the specialists felt that my symptoms were generally down to that which I understood as I did end up having severe anaemia.  I struggled on but eventually had to have a hysterectomy in 2008 (ovaries remain).

After I recovered from that - I was then really hopeful and fully expected for my health (& particularly my energy levels) to return to normal.  However, a year down the line after that, yet again, I felt I was still suffering many of the effects of hypothyroidism! By this time - thyroxine was the only medication I was taking so there were no other prescription meds it could possibly be interfering with!

As a result of finding info on the internet, and particularly this Thyroid UK website (my absolute "saviour"!!!) and the Thyroid Patient Advocacy website, I started to try various supplements (selenium, magnesium, B vitamins, increasing my Omega 3 intake etc) which, whilst although did provide a minor improvement, unfortunately, still didn't fully provide all of the answers.  I also did try taking (off my own back thru purchase on the internet - something I wouldn't poss normally recommend but was desperate and did go through a reputable supplier)  "Armour" NDT only  thyroid for a few months - unfortunately, that did not work for me and I ended up feeling so much worse than being on the thyroxine but I'm glad I tried it anyway.

With the interesting research of the DIO2 gene & the conversion issues over "T3" I then decided to be tested for that and indeed I did get a positive result on the defective gene.    After an awful of persuasion (after referral to another specialist endocrinologist who was extremely reluctant to even consider giving me T3 as he said in the main this was only given to people who had no Thyroid at all as it was extremely powerful!) but he did at least agree to me having a trial. After some trial and error with the dosage,  I was delighted that eventually I was prescribed T3 as indeed that definitely improved and eliminated the "Brain Fog" immediately and gradually my weight returned to my normal weight of just under 11st  (previously my weight had always been between 10 to 11st for all of my life but I knew something wasn't right when, whilst being on Thyroxine only, my weight gradually crept up to 13st and did not go down despite my all of my efforts to reduce it and I looked and felt just so bloated and felt "not right").

With regard to the dosage - I am currently on 125mcg Thyroxine and only 5mcg (am) and 5mcg (pm) of the T3 - which I know someone has suggested that perhaps might be a bit low - but for me (& I have read the medical papers regarding the possible optimum ratio) that seems to be the ratio that works for me - but I did go thru a lot of trial and error - other combinations of the ratio made me have sweats and heart palpatations or the return of the "brain fog" and headaches.  I have now been on that since 2012.

So, my head felt better and my weight was back down to normal - great I thought - finally getting somewhere - but unfortunately I have and still am suffering from extreme lethargy.  Some days are worse than others - particularly bad when 'expending' any sort of energy - even doing say something like vacuuming seems to "wipe me out" completely!  

Then more recently - within the last 6 months or so - I started to get problems with my balance!  Just so awful - but thought that with these extreme symptoms perhaps something may finally show up on some tests.  Once again, I've seen a specialist endocrinologist (who performed a thorough examination and check for any swelling of glands and commissioned some blood tests - results shown below but basically all within normal reference ranges) and he said in all his years of experience he has never known thyroid issues to cause problems with balance.  I was referred immediately to a neurologist - he performed a thorough examination and I've had MRI scans of the brain and spine - but everything has come back as normal - which whilst reassuring in many ways - I just find it so frustrating how I can feel this ill and have all of these symptoms and seemingly it not show up anywhere as to what is causing this!!!

I still feel that it is something within the endocrine system that is not functioning quite as it should as I know how I was before having hypothyroidism and how I've felt since.  I feel this balance issue is related to my energy levels and if I can get that sorted then this would help my balance. I used to have loads of energy, loved going out for walks and be the life and soul of the party - but this has changed my personality completely and as some others have mentioned before - it's like a "switch" has been turned off. Somewhere along the line - rather like a car engine - even though the fuel is "topped up" and gauge is showing as full - unfortunately it feels like the "spark plugs" aren't firing.

I've tried all manner of different vitamin supplements, in the many different forms available (liquid, patches, sprays and sublingual) as I thought perhaps I had an absorbtion problem.  I've also tried various adrenal supplements, and herbal preparations (incl a visit to a Chinese herbalist).  On the important issue of vitamin B12 - I did look into that some time ago as indeed if you are deficient that can cause problems with balance - but I've had numerous blood tests for that (NHS and private) & I paid to have that new "active" B12 test - but once again that has come back as ok.

I also paid to have my Vitamin D levels checked - these came back as being a little on the low side (tho disputed by my endocrinologist!!) but have been taking Vitamin D supplement for over a year now so would have thought my levels would be at optimum by now.

Interesting point that someone mentioned the issue of "Gluten Ataxia" which I've not heard of before.  I have now looked this up and although I know I don't have any of the symptoms of Crohns or Cealiac disease, I  have read that some people with thyroid issues develop an intolerance to gluten.  I did therefore send away for this home testing kit which is supposed to be reliable healthcheckshop.co.uk/store...

however, I have performed this test this morning and it has come back as negative.

With regard to my original query regarding interpretation of the results of the Metabolic analysis tests by Genova diagnostics - this is the info of the test I purchased (which as prev stated the results of which did suggest I needed improvements to my gut health by the use of pre and pro-biotics and digestive enzymes which I've tried as I did think perhaps I have a malabsorption issue - but so far - no improvement in my energy levels).

gdx.net/product/metabolic-a...

Anyway - for info - here are the results of my latest blood tests:

TSH        0.05 mU/L (0.35 - 5.0)

Free T4  17.5 pmol/L (7.0 - 20.0)

Free T3   6.1 pmol/L (3.3 - 5.3)

Serum B12 1033 ng/L (130 - 800)

Serum Folate 12.4 ug/L (4 - 20)

Ferritin 101 ug/L (12 - 250)

I went back to my GP last week - as also I now have frequent night-time urination - he has prescribed me some medication to help with that along with ......anti-depressants!!!

All-in-all I think basically I've now reached the end of the line regarding testing via the NHS and am just going to have to continue with alternative methods of getting my health back. Am currently looking at various herbal treatments that perhaps may help balance hormones/improve energy levels.  

I'm also looking into the issue of insulin resistance - although my blood sugar/glucose has previously been tested and proved to be 'normal' I can't help wonder if there is an issue regarding how glucose is re-circulated to provide energy?   But if anyone has got any other advice I would be extremely grateful as now having this balance issue really is severely impacting my life and am starting to be become housebound which I am so upset about.

I do have the utmost respect for the medical staff and the NHS as a whole but think it's just so terrible that the medical profession just don't seem to be taking all of our concerns and symptoms on board and seem so fixated just with what's on their computer screens and paperwork! But hey - no worries - at least their performance indicators and targets are on track!

Thanks once again - without this website and info I have gained so far think I would have well and truly felt completely isolated and will be making a donation shortly to Thyroid UK campaign to keep up the good work but if anyone anywhere does have any other ideas I would be extremely grateful as I'm really starting to get desperate now to regain my health x

[radd]

bbh, 

With a DI02 impairment T4 alone will never cut it for you. I had terrible balance and cognitive issues until I added T3 to my T4 last year and still continue to slowly improve.

Your results show you are having adequate meds but probably in the wrong ratio as they are clearly not working for you (for any number of reasons).

When T4 doesn't work it can convert into reverse T3 encouraging hypothyroid symptoms and preventing further T3 from working. The over range T3 result shows only what is circulating in the blood stream and not what is being up-taken into the cells to become active and so give well being.

You could do a reverse T3 test but to medicate on these results is extremely complicated as they are so multifactorial and endos never understand them. If this were me I would reduce both T4 (because it may convert to further RT3) and T3 (because you are overmedicated and it is dangerous) until both are about half way through range. Ensure iron and Vit B12, Vit D and folate are optimal and introduce dose raises to medicate 75//100mcg T4 alternate days and 20mcg T3 divided into two doses. 

Less T4 will reduce the chance of further RT3 and a higher dose of T3 will encourage further conversion of T4 so opening more thyroid hormone receptors and allowing better usage into the cells.

It is important to address the root cause of why this is happening or it may repeat at some stage. Low thyroid hormone (or hormone that isn't working) can encourage an over reaction to gluten (and dairy) causing damage to the intestines resulting in pain & poor absorption of nutrients. Blood tests will only detect gluten antibodies in the blood stream where the gut is so permeable that gluten can easily pass through...this is a relatively advanced stage of disease.  Adrenal Fatigue and gut problems are common in thyroid disorders when patients do not do well on T4 alone.

Insulin resistance and anti D's can effect the workings of good thyroid hormone synthesis. Another factor could be an imbalance in sex hormones (perimenopause//menopause ? ? .. ) Higher oestrogen can also encourage insulin resistance. 

You need to keep supplementing to ensure good nutrient levels encouraging thyroid hormones to work. If you have the DI02 impairment you might like to consider the MTHFR genetic test or supplement Active B12 (methylcobalamin) & L-5-MTHF (5-methyltetrahydrofolate) which are easier to absorb as are in the form where the body doesn't have to do any conversion. Although your levels are good, remember this is only measuring the amount in your blood stream.

Also Vit C (I take 3g daily) for good adrenal health which will have taken a battering when compromised with low thyroid hormone. This will also help with insulin resistance as cortisol (adrenal hormone) aids blood sugar balancing. Eating smaller more frequent meals including proteins, low GI carbs and healthy fats at every meal will help further.

Gut issues may benefit from Betaine HCL as many hypothyroid people suffer from low gastric acid. Do not take if you suffer stomach ulcers or are medicating anti-inflammatories.. Betaine may be taken with the digestive enzymes and probiotics.

I would only take herbal supplements with caution until thyroid hormones are working better and up to optimal levels as this often resolves a myriad of health issues  ... and the more issues resolved the better thyroid hormones work ! ! ..

.

Thyroid//gluten connection

chriskresser.com/the-gluten...

.

MTHFR

mthfr.net/forums/topic/mthf...

[thyr01d in reply to radd]

Thanks Radd for this helpful and informative post.  Are you a medic?  What is L-5-MTHF (5-methyltetrahydrofolate)?  What role does it play?

[radd in reply to thyr01d]

thyr01d,

No  ...  just another Hashi sufferer who has been dragged through the mill and back ! ! ! . 

Folate (B9) works with vitamin B12 to help make red blood cells and iron work properly. As folic acid participates in homocysteine metabolic cycle, adequate levels are required to keep this amino acid in check as high levels are considered a significant risk factor in cardiovascular disease and may disrupt thyroid metabolism.

In healthy individuals, folic acid is converted to L-methyl folate, which is the biologically active form of the vitamin. Hypothyroidism causes a decrease in the activity of the enzyme methylenetetrahydrofolate reductase, which is responsible for producing L-methyl folate in the liver. 

People with the common MTHFR problems will have further reduced activity and folic acid should never be supplemented as if not utilised correctly (due to genetic variations) it can bind up with & reduce receptor proteins reducing the absorption rate further. High levels of bound folic acid (or low levels of folate) can result in elevated homocysteine commonly seen in hypothyroidism.. 

There are different forms of vitamins and the best ones are those in the form that the body can easily absorb without having to do any conversion such as 5-methyltetrahydrofolate. This comes in many different forms and the one used a lot on this forum is L-5-MTHF. The “L” is the important part as indicates 99% pure biologically active methylfolate. 5-MTHF is NOT of the same purity but filled with lesser active folate.

I supplement Optimal Liposomal Active B12 (methylcobalamin) & L-5-MTHF (5-methyltetrahydrofolate) by Seeking Health but Jarrows and Solgar are other brands popular with members. Always supplement a B complex with this mix.

Only self education gets us well thyr01d ....

[thyr01d in reply to radd]

Thank-you and I'm doing my best to self-educate but there is such a lot to learn ....

[billyblondehill in reply to radd]

Thank you so much for all of this useful info - much appreciated. Perhaps I will go "back to the drawing board" regarding the ratio of T4/T3 and look into altering the dosage again plus all of the other things you mentioned.

Overall, I think the crux of the matter is that it would seem that currently there seems to be no test available that is able to measure what the "cell uptake' is regarding thyroid hormone/vitamins etc. I just hope someone, somewhere is conducting research into this that would indeed help us with all of these symptoms.

Thanks once again x

[lc1973]

Hi there

What a wonderfully written account, i thought you were writing about me! lol! All so similar story to yours but i havent the DI02 gene tested..ive tried many things but i cant shift a bean in weight...im 5 1/2 stone heavier than i used to be and im really fed up with it. I now take T3 as well...150mcg levo and 20mcg T3 but reading the reply from Radd i'm wondering if a reduction in levo might help. I have other issues like low cortisol and low progesterone to estrogen ratio also mentioned by Radd which i am trying to work through and im about to try something called 5_HTP and see if that offers some relief. I had hoped that T3 was the answer for me...it might be but maybe i havent quite got the recipe right just now. Good luck in your search for answers. x

[billyblondehill in reply to lc1973]

Ah thanks - very interesting to read your account x I've tried 5 HTP but it did nothing for me unfortunately x Yes I shall re-try with my ratio of T4/T3 now and just see if that makes a difference with this balance problem I have but best of luck with your issues x Sooner or later, I feel somewhere along the line we will come up with some kind of definitive answer as to what is causing us all of these issues x

[Josiesmum]

Bloating and puffiness and many other symptoms can be related to food sensitivities. Have you thought about trying an elimination diet/Paleo autoimmune diet which may help identify specific food intolerances? 

My daughter has low cortisol rather than hypothyroidism but her symptoms were the same. I found a photo of her taken last summer and she looked so puffy and ill, she looks like a different person now, so bright eyed and healthy. Her CFS has improved significantly. Prior to trying exclusion diets she had no idea she had food sensitivities and her celiac test was negative. She has excluded dairy and grains and now eats mainly meat, lots of veg and fats. I would really recommend giving it a try.

thepaleomom.com/autoimmunit...

[billyblondehill in reply to Josiesmum]

Ah thanks for that - most interesting and yes - think I will be looking into this as well x

[Marz]

Adrenals ? Maybe why the Armour didn't work for you ...

Also having the B12 tested is a bit hit and miss as it only shows you what is in the blood and not what is in the cells. Supplementing the B complex would also have skewed your results .... Having ataxia is one of the neurological symptom of LOW B12.

Cannot remember - do you have Hashimotos ?

Could you try T3 only ?