Hypothyroidism and muscle weakness

[Sammy0]

Does anyone with hypothyroidism suffer with actual muscle weakness and loss of motor skills-I can barely type on a keyboard or write, my arm and wrist aches so much. I have hand tremors. I'm continually suffering with shoulder aches and back pain. However, when Drs test my strength they tell me there is no loss of actual strength and nerve function tests have been normal. I've been tested for all the other nasty things like Parkinsons and MS and had these ruled out. My thyroid function tests are also within normal range though freeT4 and free T3 are in the bottom-mid of the range. I've heard of hypothyroid myopathy and wondered if anyone had hd this or recovered from this? Just about to start taking T3 and hoping this would help?

[SeasideSusie Remembering]

SammyO

My thyroid function tests are also within normal range though freeT4 and free T3 are in the bottom-mid of the range.

That could be your problem. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. You are probably undermedicated.

To know if you need T3 you need TSH lower than 1 to give the highest possible FT4. If FT4 is high in range and FT3 low in range, and you divide FT4 by FT3 and the result is over 4 then that indicates poor conversion.

Before adding T3 you need optimal nutrient levels :

Vit D - 100-150nmol

B12 - top of range for Total B12 or over 100 for Active B12

Folate - at least half way through range

Ferritin - half way through range

[Sammy0 in reply to SeasideSusie]

Thank you for your advice. My free t3 and free t 4 are low in the range but my tsh was 0.44. So my private dr wants to try adding t3. My ferritin levels are right at the very bottom of normal, could this be an issue? My b12 and vitamin d tested normal

[SeasideSusie Remembering in reply to Sammy0]

SammyO

My ferritin levels are right at the very bottom of normal, could this be an issue?

Absolutely. Ferritin is recommended to be half way through range, 70 is generally said to be the level needed for thyroid hormone to work properly and some experts say for good thyroid function it should be 90-110.

My b12 and vitamin d tested normal

Normal doesn't mean anything other than it is within range but it's where in range that matters. We Hypos need optimal levels which I've given above. What are your actual results?

[Sammy0 in reply to SeasideSusie]

B12 is 599(197-771 )ng/l. Ferritin was 96ug/L (30-400). Folate 8.7 ug/L (no reference range.)

[SeasideSusie Remembering in reply to Sammy0]

OK, so they're not dire but could be better.

B12 - According to "Could it be B12" by Sally Pacholok,

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml (or ng/L) to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Folate - when there is no range with lower and upper limits we suggest to aim for double figures.

A good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B will help improve both these levels.

Ferritin is recommended to be half way through range which is 215 with that range. However, that range is usually seen for males and we don't know if you are male or female and if female it would be OK to be lower than that, the highest female range we normally see is 15-300.

No Vit D test?

[Sammy0 in reply to SeasideSusie]

I will take your advice thanks. I was taking b12 when I was tested but it clearly wasn’t working very well if my levels were low. I didn’t have my vitamin D tested but do take a vitamin D/ calcium supplement every day as well as magnesium. How can I supplement my ferritin? Is this the same as iron? My main issue is that when Drs increase my levothyroxine to levels that increase my free t3 and free t4 my tsh drops too low. They panic and lower it again .

[SeasideSusie Remembering in reply to Sammy0]

SammyO

With your B12 level you don't need a separate B12 supplement, you just need a B Complex. When taking a B Complex we need to leave this off for 7 days before any blood test as it contains Biotin and this can cause false results.

Why are you taking a Vit D supplement containing calcium? Was this prescribed? If not we shouldn't take a calcium supplement unless tested and deficient and the GP should prescribe. Taking D3 aids the absorption of calcium from food so calcium level will probably rise anyway, this is why we need to take Vit K2-MK7 because it directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems like kidney stones, calcification of arteries, etc.

When supplementing with D3 we should test twice a year to check our levels are within the range recommended by the Vit D Society and Grassroots Health - 100-150nmol/L.

Ferritin is our iron store, it's not the same as Serum Iron. We shouldn't take iron supplements unless we do an iron panel to see if we have iron deficiency or if we know that we have anaemia, then it should be prescribed and regularly monitored by the GP. Taking iron tablets when our serum iron is already good will cause it to rise and too much iron is as bad as too little. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

My main issue is that when Drs increase my levothyroxine to levels that increase my free t3 and free t4 my tsh drops too low. They panic and lower it again .

They shouldn't be adjusting dose of Levo based on TSH as it is not a thyroid hormone, it's a pituitary hormone. The thyroid hormones are FT4 and FT3 and these are what they should be looking at but unfortunately most doctors are ignorant of this fact.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

If you need a very high FT4 to get a reasonable amount of T3 then conversion is poor as mentioned in previous reply and that's when adding T3 may be beneficial, but if both FT4 and FT3 are low in range the first thing you need is an increase in dose of Levo to raise FT4 to a decent level.

[Sammy0 in reply to SeasideSusie]

Wow there is so much to take in. Who knew it is so complicated. I’ve a gp who’s only interested in my tsh and thinks I’m ok. I’ve seen an nhs endocrinologist who has passed me as being ok with those numbers and referred me to a neurologist. I’m finally seeing a functional dr who has first addressed my high cortisol and gluten sensitivity. Seems I still have a long way to go to get my body in balance. Thanks for the advice, no Drs will ever tell you these things, don’t think they even know about anything other than tsh and levothyroxine

[Sammy0 in reply to SeasideSusie]

Hi seasideSusie sorry to come back to your past post but I took your advice and recently took a vitamin D test. Apparently it’s comeback that I’m insufficient in vitamin D. Level 41 ( sufficient range is 50 -150). Could it be possible that my muscle weakness and joint pain and twitching could be down to this and not my thyroid levels? I’m seeing my dr tomorrow and we’ll ask about it.

[SeasideSusie Remembering in reply to Sammy0]

Sammy0

That is very low.

Muscle and joint pains are symptoms of low Vit D so that could possibly be the cause of yours.

Are you still taking the calcium/Vit D? Is this prescribed? You didn't answer before when I asked why are you taking this and have you had calcium tested? You should only take calcium if tested and it is low and it should be prescribed by your GP and calcium level monitored.

The calcium/Vit D that is prescribed is lots of calcium and a tiny bit of Vit D, the amount of Vit D wouldn't increase a low level.

Taking D3 increases calcium anyway as it aids absorption of calcium from food.

I will post the comments I always post about Vit D.

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.

To reach the recommended level from your current level, you could supplement with 5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

[Sammy0 in reply to SeasideSusie]

Thank you. No I stopped taking the calcium vitamin D supplements when you mentioned it and haven’t taken anything other than magnesium since. I get so confused as to what and when I should be taking things so thanks for your clear advice which I am following now as best I can. Finding the vitamin D test you recommended was really helpful. I will look at the k vitamin as well. I just need to get my gp on board . I do hope this is the cause of my problems

[SeasideSusie Remembering in reply to Sammy0]

Don't be surprised if GP not interested. They have little to no training in nutrients and don't understand that "somewhere in range" isn't necessarily optimal for a hypo patient.

[Murphysmum]

Oh yes!! All of the above.I haven’t actually heard of hypothyroid myopathy (away to google wondering how I’ve missed/forgotten it) however the end result is that about 4 years on from the start of my nightmare, I DO have significant muscle loss.

I have taken all my vits n mins throughout, all have been at reasonable levels (never poor), I’ve used protein shakes, taken creatine - you name it, and throughout I’ve kept doing as much as I could in terms of service, even when I would rather have slept in the sofa.

I spoke to a physio last week as now pre existing hip issues have been exacerbated because of the muscle loss. She said she has heard of this but didn’t elaborate.

Any doctors I’ve seen and complained to over the last few years have dismissed it out of hand.

I’m now on T3 and I can say that generally I am much better. My levels are good and my energy levels on the whole are much better than they’ve ever been on thyroid treatment, so from that point of view, T3 has helped and I guess maybe reduced the muscle deterioration compared to what it might have been. But it’s still there and as I type now the feeling of weakness is here. I have a separate post on as I think my issue now is other hormones affecting the efficiency of my T3, and maybe this will sort the muscle issues once and for all.

All I can suggest (aside from a T3 trial maybe!) is to keep exercising, and don’t give in. I dread to think how badly off I would be if I had given in.

[Murphysmum in reply to Murphysmum]

Just to add, I’ve just looked up myopathy (I don’t know how many times I’ve looked upMuscle weakness and found nothing) and now I’m a bit scared!

You’ve spurred me on to return to see my consultant and push for this to be resolved more. Especially since hip role placement surgery might now be needed and the article I read didn’t sound very positive about this!

Thanks for your post and I hope you get better soon. Hoping mine can still be resolved 😬

[Sammy0 in reply to Murphysmum]

I do hope you get sorted. Good luck.Muscle weakness is my main concern and nothing seems to be resolving it but I’m going to try to take the advice on here about checking my vitamins and levels. I actually was referred to a neurologist who’s a gluten sensitivity specialist. He found an antibody in my blood for gluten sensitivity so I’m now on a gluten free diet. He said allergy to gluten can also cause neurological symptoms and muscle weakness

[Hidden in reply to Murphysmum]

When you take "Vits" is it with something that has Saturate fats in it because A.D.E need fat to be able to assimilate into bodies system or just passes through.

B & C are Water soluble.

[Sammy0]

This is so good to hear now I’ve just started a trial of t3. We’re you also taking levothyroxine as well. Just started it so time will tell but you have given me hope. What worth sorting out my vitamins I hope I will get somewhere