Motor neurone diagnosis but think issues are thyroid related.

I’m posting on behalf of my dad. He was diagnosed with papillary thyroid cancer in Sept 2016. He had a 6 and half hour operation to remove his thyroid, 2 parathyroids, and over 40 lymph nodes as it had spread. He then had one dose of radioactive iodine and in early 2017 was given the all clear.

After the op, he was initially put on T3 but leading up to the radioactive iodine, it was swapped to T4, which he stayed on since.

In the last year or so, he has had progressive muscle weakness, primarily in his legs. Also muscle twitching and cramps, which then spread to his arms. The dr referred him to a neurologist who initially said his nerves were fine. More recently, he had an EMG test to check his nerves and was then told they were 98% sure he has motor neurone disease.

In the last few weeks, his oncologist put him on T3 (as well as T4) as he told him that 20-30% of people can’t convert the T4 in their bodies. My dad has had some slight improvement on T3, the cramping has stopped and the twitching has decreased significantly.

Can anyone shed any light on this or has had a similar issue? We are praying that it’s not MND as they’ve said he has 4 years max left if it is.

Thank you.

[Heloise]

I think many Hashimoto's patients have this issue. High cortisol affects the nervous system as it tries to support the low thyroid. Fight or flight is difficult on the body.

Now you have to look at nutritional deficits since digestion will be low. It's often b vitamins like B12 which is essential. I always use enzymes to ensure extracting nutrients.

It's unfortunate that doctors don't connect the dots of the many symptoms to see they lead to low thyoid and possibly autoimmune disease. I think they like the fancy names.

[Hidden in reply to Heloise]

Hello, thank you for your reply. I’ve actually just ordered him some B12. It’s frustrating to go round in circles, then for him to be told he has something which is terminal.

[Heloise in reply to Hidden]

Oh, I agree. I've been here for five years and for five years I felt thyroid disease was the least understood and treated condition to the ruination of so many patients. I think it is so dire that we MUST educate ourselves. There has been a leap in knowledge because functional doctors are making their voices heard. They look at body function and also the research that is totally ignored by conventional medicine. Of course it is time consuming to do this. In fact I feel personally I have to protect myself from the machinations of conventional doctors who will get you into a web of tests and evaluations and then not be able to help. Functional doctors also have a battery of test if you are lucky enough to find a good one.

I would also urge you to get your father on high dose of vitamin D for a while. It is almost always deficient and so necessary for ALL other hormones to work.

Ray Peat, Izabella Wentz, Tom O'Bryan, John Bergman and many other experts who really DO know how to treat thyroid and autoimmunity.

[Hidden in reply to Heloise]

We live in Norfolk, UK. Are any of these people anywhere near there?

[Heloise in reply to Hidden]

Doubtful as most are U.S. but you could learn a lot by visiting their sites and their talks on you tube. There is this ifm.org/

[Cooper27 in reply to Hidden]

You may be able to find a good nutritionist (similar to a functional practitioner, but I think they cover less lifestyle stuff) via this register:

bant.org.uk/bant/jsp/practi...

Email a few to see if you can find someone who has experience with thyroid.

[Hidden in reply to Cooper27]

Thank you, I shall take a look

[Heloise in reply to Hidden]

I'm sure more frustration is on its way. Sorry just being brutally honest. This site is also very useful in the U.S. Since your father is already showing symptoms I would begin B12 anyway and stop taking a few days if they actually will do a test unless it is scheduled immediately. stopthethyroidmadness.com/l...

B-12: We noticed repeatedly that an optimal B12 lab result is in the upper quarter of the range. Mid-range can present symptoms of inadequate levels, such as legs falling asleep too easily, or the same with little fingers or other fingers.

Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. It is NOT optimal to simply be “in range”. For example, if your range is similar to 180-900, a healthy level appears to be 800 or higher. In the 500-800 range, you can benefit from taking B12 lozenges, specifically Methylcobalamin. The exception to the latter for some may be if they have both an MTHFR and COMT mutation–the methyl version of B12 can sometimes send out B12 levels way too high.

It has been shown in studies that patients with labs under 350 are likely to have symptoms, which means the deficiency is very serious and has gone on for a few years undetected. Even mid-range has shown to be in adequate. Lab ranges are much too low for B12…in Japan the bottom of the range is 500. The urine test Urinary Methylmalonic Acid, also called the UMMA, can be added since it is a very sensitive detection and if high, will reveal a true B12 deficiency.

FOLATE: Standard range is 3-17, so optimal would be at least the top third of that, we have noted. Higher for MTHFR.

Also sometimes called “folic acid”, this is a b-vitamin which can be low in hypothyroid patients. Folate is important for prenatal development, as well as your blood cell health. Folate works with B12 in the use and creation of proteins. It’s “folate” thats needed instead of “folic acid”, especially if you have MTHFR. We don’t start too high, as for some of us, it can start the methylation process too strongly.

[Hidden in reply to Heloise]

Thank you Heloise, I shall pass this information on to him. Anything which might help is worth trying. I did read a piece of research which stated that parathyroid issues could be a trigger for MND.

[Heloise in reply to Hidden]

Oh, did they remove all four?

[Hidden in reply to Heloise]

No, just two, plus his whole thyroid. There were two surgeons operating as he also had tumours in his neck and they had to go behind his collar bone to remove some from his chest. We’re operating for 6&half hours.

[Heloise in reply to Hidden]

From my limited knowledge I think you can manage on one. If they monitor his calcium levels he should be ok. This is a bumpy road as your metabolism is essential to every cell in your body. Doctors don't seem to understand.

[Hidden in reply to Heloise]

I’ve been saying for a while that he needs to see an endocrinologist as they have the best knowledge on the hormones, their levels, and interactions within the body. He asked his oncologist some questions and received the reply ‘Good questions!’ with no forthcoming answers.

[Heloise in reply to Hidden]

Unfortunately a good endo is hard to find but any are probably better than the oncologist. People here may be able to help as I'm in the U.S. but just do another post asking for anything you need to know, there is lots of collective wisdom for the asking.

[Hidden in reply to Heloise]

Thank you Heloise. Thank you for taking the time to respond. He was told on more than one occasion that it was just muscular myopathy, then after the EMG we got the awful news. I can tell he’s scared but trying to hide it.

[Heloise in reply to Hidden]

I don't think he should worry about this. I looked up reasons for m m and found this: Endocrine myopathy: This occurs when a disorder of the hormones interferes with muscle function. The most common causes include thyroid or adrenal gland problems.

With no thyroid hormone in your muscles which seems to be the first symptom of low thyroid because smooth muscle depends on it, it makes sense.

With no thyroid gland to work with he has to be perfectly supplemented. Clutter used to be here and was very knowledgeable in this area. I wish I had all her comments but maybe you can research and find them.

Lately I have found out that the fascia which coats all muscles and organs have pain sensors. Does your father have pain?

[Hidden in reply to Heloise]

He is getting a lot of aching and was previously getting a lot or cramps

[Heloise in reply to Hidden]

Leg cramps? I have to reverse myself about the oncologist for recognizing the fact that T4 is not easily converted for Hashimoto's patients. I think they still want to prescribe T4 if you've had cancer but T3 is really the active hormone. That's all I take. But even the aging process make it's impact on muscles. If he has adrenal issues, low potassium and low magnesium have to be supplemented as well. I'm not sure if this causes a problem with calcium or not but minerals are difficult to digest and low acid is a big problem with aging. So are enzymes. I'm sure you are getting dizzy at this point but unfortunately the two things you need to live is thyroid hormone and cortisol. When your thyroid and adrenals are sub par you will have loads to deal with. I hate saying these things but I have found no way around this learning curve. The brain is also at stake. It needs healthy fats and people get too many unhealthy fats. Do you think he would seriously make lifestyle changes?

[Hidden in reply to Heloise]

Yes I think he will. He’s taking smoothies, has stopped drinking alcohol (as he’s found it makes things worse) so I think he would.

[Heloise in reply to Hidden]

There is wonderful research. You can go to PubMed on almost any topic. I listened to the Autoimmune Revolution which I think the increase of autism and alzheimer's have forced some researcher to look into it. (Drug companies only seem to do research on new drugs they can use but they aren't coming up with much.) The question is why are our bodies attacking ourselves. Not technically but our immune systems are overwhelmed. It tries to fight every foreign attack it sees but there are too many toxins. You still do better by building up your immune system than what drugs normally do (break down or deter your immune system). Toxins and endocrine disruptors are ubiquitous. If you have Netflix there are two good documentaries that would apply to all of us with immune conditions and cancer. One is "Stink" about the various chemicals we encounter and "The Magic Pill" where autoimmune conditions have been mediated somewhat by the diet. Very interesting to watch. I recently viewed a summit, The Truth About Cancer, which looks like it isn't that difficult to treat. I know you have to become a real cynic to believe the conspiracy theory but you'll get there

[Hidden in reply to Heloise]

Thank you, I shall tell my dad about these Heloise.

[SeasideSusie Remembering]

Helping_Dad

Before you start the B12, it would be best to test. If he is B12 deficient then he may need injections, and starting B12 supplements prior to further testing will mask B12 deficiency.

I'd also test other nutrients too.

As he is on thyroid replacement, I'd also do a full thyroid panel to include TSH, FT4 and FT3.

If you can't get everything done at the doctors, then we have some recommended labs who can do everything in one test bundle, including

TSH

FT4

FT4

Thyroid antibodies

B12

Folate

Ferritin

Vit D

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

Both can be done by fingerprick test or venous blood draw.

(This test is also possibly the cheapest way to get the nutrient levels tested if GP wont do them).

[MissGrace]

I really wish I could help, but I’m just not knowledgeable enough. However, I wanted to send your dad and you lots of love, hugs, good wishes and hope for the future. We love our dads. I lost mine some years ago now and I miss him every day. You dad is lucky to have you fighting on his side and doing all you can for him. Keep up the fight. xxx

[Hidden in reply to MissGrace]

Thank you MissGrace, I really appreciate that. X

[shaws]

Lots of us on this forum have been diagnosed with other things we didn't have - some even have treatment. Even sometimes after being diagnosed with hypothyroidism when we've symptoms they are usually classed as 'nothing to do with hypo' and given medication instead of optimum thyroid hormones..

We have also had some past posts where members had been in mental hospitals. As doctors no longer know any clinical symptoms, it is not surprising that many hypothyroid patients may remain undiagnosed. This is copied from TUK - and look towards the bottom of the page for Mental and Emotional symptoms. Above this is lots of other symptoms.

[Hidden in reply to shaws]

That’s terrible! It’s seems that there needs to be much more research into the causes of thyroid issues.

[Hidden]

He has gotten progressively weaker over the last year since being on T4 only. He was told time and time again that his bloods were normal though. He went back on T3 about 5 weeks ago and felt great after his first tablet but has been feeling weaker and achey again now.

[Hidden]

I think he is on 20mg of T3 and 125mg of T4. He’s never been given a printout if his results so I would have to ask if he knows what he’s been checked for. He’s only been on T3 for about 4-5 weeks.

[Hidden]

Ok, I shall pass this info on to him and let him know, thank you.