Hypo-thyroid and polymyalgia rheumatica - adjus... - Thyroid UK

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Hypo-thyroid and polymyalgia rheumatica - adjust levo?

Hashi-hacker profile image
15 Replies

Hi,

I'm asking on behalf of my 75 year old mum. She has been on roughly 100mcg of levo for about 30 years for hypothyroid, however for the last few months she has had a lot of pain in her ankles and knees and finds it uncomfortable to walk the dog which is making her miserable. She also suffers from SAD and struggles with sleeping. Right now it's the pain that's causing her most problems and her doctor is suspecting polymyalgia rheumatica which he would treat with steroids but comes I believe with the risk of worsening insomnia and could be needed for years.

I've attached her Medichecks results - what do you think of her results? In particular her over range T4 and suppressed TSH, should she reduce levo dose or would this risk reducing her good T3 result (62% through range)?

Her B12 needs improved - would you suggest supplements and/or should she be asking her GP about injections? Her Vitamin D also needs improved, we'll get her back onto the supplements for this.

I have Hashi's and suspected my mum would have too but her lack of antibodies surprised me. The polymyalgia rheumatica is auto-immune so we could work on reducing inflammation through the auto-immune protocol for her diet, but I'm not sure how she'd feel about going gluten free etc. Any thoughts about this?

Thanks in advance, this forum is invaluable.

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15 Replies
Hashi-hacker profile image
Hashi-hacker

Edit to the above - the GP put her on 150mcg levo for 4 weeks and the results were taken after 4 weeks, which might explain the high T4 result. I hadn't realised this had happened. She took the test on empty stomach, no meds etc as per the advice on this forum.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashi-hacker

B12 too low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken immediately after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your Mum’s serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/vitamins/vit...

Suggest you get full thyroid and vitamin levels retesting in 3 months

SlowDragon profile image
SlowDragonAdministrator in reply to Hashi-hacker

That was a huge jump from 100mcg to 150mcg Yet her Ft4 is only slightly over range

How long since she reduced from 150mcg back to 100mcg?

Retest thyroid levels 6-8 weeks after any dose change or brand change in levothyroxine

She may need 125mcg daily

Hashi-hacker profile image
Hashi-hacker in reply to SlowDragon

She put herself back onto the 100mcg dose which is what she's had for years at 4 weeks as she was getting headaches, a new symptom. I agree it was quite a jump, so 125mcg might be a better test. I also agree that 4 weeks seems too soon for the retest.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashi-hacker

Get her vitamins improved and retest thyroid levels, even if don’t do vitamins at next test

Monitor my health is cheapest for TSH, Ft4 and Ft3 at £26.90 if order via thyroid U.K. to get discount

Hashi-hacker profile image
Hashi-hacker in reply to SlowDragon

Magic thanks I'll check that out.

SlowDragon profile image
SlowDragonAdministrator

Would suspect SAD and bone pain related to low vitamin D

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Hashi-hacker profile image
Hashi-hacker in reply to SlowDragon

She takes magnesium at night (levo in the morning), can't remember the dose she takes. I've ordered her vitamin D drops to take and will get her onto vit K2 later when she's boosted the vitamin D levels (I don't want to swamp her with too many things to take, she jokes about 'rattling' with too many supplements).

Do you think it is possible she has Hashi's despite not having the antibodies? I am not sure if we knew either way if it would change the approach. She is not keen on trying out going gluten and dairy free etc to reduce the inflammation, but she might be persuaded if she continues to be in pain and/or if she starts steroids and they don't work. My husband is coeliac with other food complications and I think she's been put off by what she perceives to be a lot of hassle shopping and cooking in a particular way.

I've asked her to ask her GP about both the B12 and vitamin D so that hopefully they will start to monitor these levels, failing that, we will continue with Medichecks.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashi-hacker

I'd get everything else first ....then as you say .... trying gluten free as totally separate issue ... perhaps in spring ...after lockdown

If trying too much at once it's difficult to see what's helping

SlowDragon profile image
SlowDragonAdministrator

Hopefully improving vitamin D will totally fix joint pain

But if not

Personally I would try gluten free diet BEFORE considering steroids

Gluten frequently responsible for joint pain

Steroids often mess up/lower TSH ....then likely to get levothyroxine dose reduced 😒

Hashi-hacker profile image
Hashi-hacker in reply to SlowDragon

Thanks for your help x

Anthea55 profile image
Anthea55 in reply to Hashi-hacker

I totally agree with SlowDragon. Diet before steroids and then steroids may not be needed.

I was getting joint problems several years back and had myself tested for food intolerances. Main ones were wheat and oats. After a couple of months without them my symptoms were much improved. Also to my surprise, I no longer had the indigestion which had plagued me for years - bonus! For me it's not the gluten, but the wheat and oats, so I go gluten free, but also avoid 'gluten free oats' which appear in many g f foods.

Try the gluten free separately from the dairy free. Also remember that it takes time to clear the body from whatever you are giving up, so don't rush. It may be 2 or 3 months before your mum notices the improvement.

I would add that I am now 81 and I reckon that I would be in a wheelchair by now if I hadn't found out about my food intolerances.

All the best.

Hashi-hacker profile image
Hashi-hacker in reply to Anthea55

Wow, thanks for the reply, I will mention this to my mum, she is not convinced that food can impact your health despite for example her sister no longer needing a section of bowel removed due to inflammation, because she changed what she ate and reduced the inflammation - the consultant was astounded and happy not to do the surgery.

Anthea55 profile image
Anthea55 in reply to Hashi-hacker

Adding to my comments above - my mother had indigestion just like mine. It is my personal opinion that she may have been sensitive to wheat and oats just as I am. She went on to develop colon cancer; they operated, but it recurred some years later.I have had colonoscopies to check but all clear so far.

Yes, food can affect your health in many ways.

Since finding out about my intolerances I've found that oats are the ones that cause my hands to swell and get hot - takes about 4 hours after eating them; I was visiting a friend who had just made some flapjacks and she encouraged me to try one. They did smell good. About 4 hours later hot swollen hands.

Wheat - various forms of inflammation and indigestion. There were other sensitivities on my list, but wheat and oats were the main ones.

I'm also sensitive to potato. It's not one of the allergens printed in bold on food lists, so took me longer to work that one out. I know it makes the inside of my mouth swell up (remember that when I was at school) and gives me food problems. There's often potato starch in gluten free products, so I'm careful reading labels. Took me ages to discover that it is in many stock powders including the one which I was using in many of my dishes - I was beginning to think that I had become sensitive to chicken, but it was the stock powder. I now find that I can use the stockpots instead.

Good luck - I hope your Mum feels it's worth trying.

Pippy28 profile image
Pippy28

I’ve been hypothyroid for 14 years (but younger than your mum - 53). At the start of the year, I was also in pain and discomfort with knee, hip and shoulder pain and stiffness. Dr thought PMR too as ESR raised. However, I was very concerned about long term steroids without a bit more certainty. We tried HRT (brought on migraines) and also had a rheumatologist consultation. He didn’t feel PMR was likely. Since then, I’ve stopped eating bread (drastically reducing my gluten even if not eliminating it) and started taking Vit D/K2 (Better You spray). Hey presto.... hugely improved aches and pains. So much so that before the gyms were shut, I had returned to exercising for 60 minutes 4 or 5 times a week. Double winner there as not only was my joint pain hugely reduced but the weight came down by over a stone and a half too. In my mind, it was the vitamin d that was the issue.

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