Muscle atrophy - 4 years and no diagnosis

[Whitey11]

Hi All,

I’m writing on here on behalf of my mum as we currently have reached a dead end in the hope of a diagnosis and treatment.

Needless to say I tried to keep the emotions out of the post.. 4 years of countless tests, doctors upon doctors, without any diagnosis...

I’ve tried to summarise all the information I have which I thought it could potentially be useful, but please do tell me if you might need to know anything else and ignore whatever is irrelevant.

The main problem is the fact that her muscles on thighs and glutes have been deteriorating in the last 4 years and there is no sign of stopping.

Female, currently 49 years old.

Menopause started at 45.

Muscle wasting/atrophy started at 45 as well. Before noticing the muscle waste, the legs felt really heavy for a few years, they still do.

Fatigue/low energy, tingling in the fingers, pain and tenderness in muscles/skin, itchy skin on muscles, pain when sitting down for prolonged period.

On and off feeling of having something in her throat, perhaps something round similar to the shape and size of Lindor chocolates(apologies, couldn’t think of anything else!).

She was given euthyrox, which she’s taken for a about a week and had to stop as it was making her feel very, very sick.

She had a positive result for myositis, but when they’ve done a second test to find out which type it is, it came back negative(it wasn’t polymyositis or dermatomyositis...very confusing).

She’s had several different tests done on her muscles, nothing really stood up other than the obvious(muscle wastage).

The only one that she hasn’t done yet as she was a bit reluctant to do so, is a biopsy on her muscles.

A couple more bits of information which I’m not sure are relevant so please ignore if not.

She did remember in 2014 she’s found a tick behind her ear(she is unsure how long it was there for) and we are planning on getting tested for Lyme disease(we’ll try anything really..)

She had surgery for appendicitis when she was 35, and she received a spinal anaesthesia, ever since, she’s had terrible migraines.(again..not sure if it’s relevant, apologies!)

We have so many different tests results I am a bit unsure what to post, also they were done in a different country so if you need anything else, could you please ask me for the technical term, as I am hoping this is how I can find it.

Her TSH: 5.9039 ui/ml.

I have also attached a photo of how her muscle wastage looks like.

Thank you very much!

[Marymary7]

I think you will need to state any medication your Mum is on. TSH indicates she needs thyroid meds. That feeling in the throat is often autoimmune thyroid. You will need to post all of the blood tests results.

Statin drugs can cause dreadful muscle wastage. Is she on those. I hope someone helps you, I'm sure good advice will follow.

I hope you get help.

[Whitey11 in reply to Marymary7]

Hi,

My mum is not on any medication currently as no doctors have been able to prescribe anything.. she’s taken the Euthyrox for 7 days only and stopped it. No statin drugs.

She is taking

She is taking some supplements though:

Vitamin D3 2000

Omega 3

Curcumin

A mix of chlorella, afa algae and spirulina

MenaQ7 (vitamin K2)

Thank you for your message!

[SlowDragon Administrator]

For full Thyroid evaluation your Mum needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

You can see here a TSH of over 5 is not normal

Median TSH graph

healthunlocked.com/thyroidu...

Other points

B12 levels often drop after anaesthetic

Getting full Thyroid and vitamin testing is next step

Come back with new post once you have results and ranges

[Whitey11 in reply to SlowDragon]

Hi,

Thank you very much for your message and taking the time to write down so many details. I have looked over some of my mum’s tests and I can see some, but not all. I will come back with all the complete test results. Thank you again!

[RockyPath]

You’re describing classical symptoms of hypo metabolism due to hypothyroidism.

Unfortunately, physicians sleep through, or otherwise fail to absorb the part of medical school on how the thyroid produces a hormone (T3) necessary to powering every cell in the body. Underpowered cells results in a cascade of failures in the systems (muscle for one example; malfunctions in digestion and nutrients absorption for another) and your highly-trained medical professional forgets to consider the thyroid, but focus narrowly on individual symptoms of hypothyroidism.

And medical textbooks don’t even cover reverse T3, because its action is poorly understood (but people who have experienced its deleterious effects know it well), so the rT3 test is seldom included in thyroid panels.

The reference ranges for standard thyroid tests are skewed by large numbers of undiagnosed hypothyroid cases. The tests suggested here fit 70-80 percent of people, so even if those tests suggest all ok with the thyroid, it could still be just that.

[Whitey11 in reply to RockyPath]

Hi,

This is all very interesting and I believe it’s more information than we’ve ever had from all the doctors we’ve been to! The hypo metabolism concerns me a bit..as I’ve googled it and it makes reference to Alzheimer’s disease?

I will research more on this and the rt3. This is all great, useful information. Thank you very much.

[RockyPath in reply to Whitey11]

Here's a link to some of Dr. Lowe's research on hypo metabolism. He treated fibromyalgia patients, but frequently people present the symptoms he lists, and they are neither diagnosed with hypothyroidism nor fibromyalgia, but their individual symptoms are explored and remarked upon with a shrug by their medical practitioners.

thyroiduk.org.uk/tuk/relate...

[peaches48]

Hello, My best wishes to your mum, as I definitely know what she is going through. For a long time, I suffered from this muscle issue. Couldn't even bear my own weight to walk upstairs my legs were so painful, nor even able to sit down for long. Mine was attributed to very low Vit D (reading of 7), low B12 and although I already had underactive Thyroid, I was then diagnosed with Coeliac (tingling in fingers and other symptoms). So, definitely get those tests done to see what her readings are and have you also considered having a test for bone density for osteoporosis, as this might show up some issues. Hopefully, these tests will give you some much-needed answers. Fingers crossed for your mum that she gets some answers soon

[Whitey11 in reply to peaches48]

Hi,

I’m so sorry to hear about your health and it makes such a big difference hearing about other people going through this as none of our friends and acquaintances ever experienced this and don’t know of anyone who has. We sometimes feel like we are completely alone! I can’t seem to find a Vit D and B12 result so I shall add it to the list of new tests.

Also my mum’s never had a coeliac test but I’ve been suspecting for a while she is suffering from this as well. It’s very weird as she never really used to..

I shall add the bone density one as well...very interesting... So your muscles are affected, as well as your bone density?

All the best to you🤗

[bookish]

There is a connection between spinal anaethesia and migraines - I believe it is called a post-dural puncture headache - my partner's mother had the same problem for years although it was eventually resolved, but I'm afraid we don't know how. I hope you can get some help for her. I suspect Vitamin D and B complex deficiencies seem likely as peaches48 says. Low D also won't be helping the headaches. Have a look at the Rightsleep website (drgominak.com).

[Whitey11 in reply to bookish]

Thank you! I shall definitely do more research o. The post-dural puncture headache. She does swear that procedure is what caused her migraines! Thank you.

[humanbean]

Your mother is clearly hypothyroid and needs treating (or needs a higher dose if she is already treated).

Having insufficient levels of thyroid hormones in the body has a bad effect on the digestion, the main issue being low stomach acid. Chronic indigestion and heartburn are common and people treat this as if they had too much stomach acid, but the problem is actually caused by having too little.

1 ) Does your mother have gut and digestion problems and does she take meds to neutralise acid and/or cut stomach acid? If she does these will be reducing her absorption of nutrients from her food.

2) What kind of diet does your mother eat? Has she eliminated foods from her diet for any reason? If yes, what? How many calories does she eat each day? Is she diabetic? Does she eat low fat high carb or high fat low carb or paleo or ...?

[Whitey11 in reply to humanbean]

Hi,

My mum is not on any medication for the thyroid.

The only meds which she takes only when she is having gut problems:

Colebil(Ox bile powder 100 mg, Methenamine 50 mg, Sodium salicylate 90 mg, Mint oil 5 mg)

And Triferment(Pancreatin - pancreas powder 275 mg)

Not diabetic. She doesn’t count calories, just listens to her body and has 3 meals a day. She doesn’t really have a specific diet.. Can’t really say it’s high or low carb. She is avoiding most dairy(cheese,milk etc) but she eats butter on rye bread most mornings.

She occasionally drinks kefir.

She rarely eats meat(if she does it’s only chicken, turkey or fish), eggs, veg soups, frozen veg cooked in butter, rice.

Eats mostly apples, oranges and bananas(in terms of fruit).

She is avoiding fried foods and anything with onion or garlic as it upsets her stomach, and any heavily prepared meals.

Thank you for your message!

[meme]

It’s now thought that the appendix is involved with gut health. When mine was removed my gut was adversely affected within hours. Do make sure she replaces her good gut bacteria every day. I use Bimuno in warm water each evening. Good gut flora is vital for good health.

Get full Thyroid tests and Vitamins and minerals.

She needs physiotherapy to maintain the muscle tone she has left.

Muscle biopsy should be a very last resort.

[Whitey11 in reply to meme]

Hi,

Thank you for writing.

We’ve had many discussions about the removal of her appendix and we have come to the conclusion that ever since she had the surgery, her health has slowly deteriorated...

We have tried to maintain gut health with Kefir but I shall look into other supplements.

She has done physiotherapy for a while. I will encourage her to continue!

Indeed...we are not really taking on board the muscle biopsy....

Thank you for your message and thoughts!

[Ell17]

Much good advice you have received. Optimal ferritin, B12 (especially for nerve/ muscle health), Vit D, folate, thyroid hormone levels, zinc, etc. and a nutrient dense diet with clean protein (for muscles) are key.

But, another thing you may want to have tested are sex hormones, specifically dhea and testosterone (androgens). Though, they all need to be in balance. The androgenic hormones are responsible for building and retaining muscle. If one is low in either of these, even with excercise, the wasting can continue. There are multiple medical reasons why muscle wasting can occur, mind you. But, your mother's symptoms, along with menopause, leads me to think that investigating dhea and testosterone may be an important piece of the puzzle.

*Note: 100-600 mg Thiamine (B1) daily can help calm the tingling nerve discomfort and is good for energy levels, as well. I take it daily for these reasons, in addition to a methylated B Complex formula, which also contains the ready to use B12 (methylcobalamin). Because, low B12 can also be a cause for nerve/ muscle issues. I hope some of the info helps.

All the best to you and your mum.😊

[Whitey11 in reply to Ell17]

Hi,

This is very good advice - more protein for muscles! It’s somehow so logical but it’s surprising how easily one can lose sight of the obvious..thank you!

We are definitely adding the hormone testing to the list! Thank you, thank you, thank you! It makes so much sense.

So much valuable advice..thank you for the supplement ideas as well. All the best to you.

[Ell17 in reply to Whitey11]

You're very welcome.😊

[SilverAvocado]

Hi Whitey11, One thing I'm suprised no one here has emphasised - your mother has an underactive thyroid, and the muscle atrophy is very consistent with being hypothyroid.

Getting enough thyroid hormone into her body should make her feel a lot better overall, and may even resolve this symptom. Its definitely a substantial piece of the puzzle.

You mention that she has been prescribed thyroid hormone, but hasn't been able to take it. What kind of symptoms did she have?

Its fairly common to struggle to take thyroid hormone with a feeling of being speeded up, too hot, feeling restless, pounding heart, etc. This is said to be because of weakened adrenals, and the main treatment is to introduce the hormone very very slowly. Cut the tablets up small, start on a small piece daily, and slowly increase every few weeks.

If the symptoms were very unlike that, it's possibly a reaction to fillers in the tablets. The first thing to try is other brands of tablets. There is a lot on the forum about different brands people have struggled with. The final thing to try is liquid Levothyroxine, but it can be very difficult to get this prescribed.

[SilverAvocado in reply to SilverAvocado]

You may have had doctors downplay this to you, but being hypothyroid is a serious illness. Everyone's body is different, so some people can feel very very unwell even with a TSH that is not far out of range.

[Samisue]

Have you heard of Lipedema? Not lymphedema. Lipedema. lymphedemablog.com/2013/03/...

[detraubuynv1]

She might have low vitamin C ..Have her check her levels. I had similar symptoms and that's what it was. Or TRY a candy with at least 60 mg vitamin C and see how she feels. I wish her well cause those symptoms are terrible.

[Christine211]

HELLO, I read your post and everything you mention in the post about your mum is exactly what I'm dealing with. The muscle loss is getting worse. Have you gotten any diagnosis yet?