Thyroid UK
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Joint pain and palpitations/missed/additional beats

I was diagnosed with hashimoto in Dec ‘05. Dosage of Levothyroxine was increased to 125 early 2009 after birth of child. Dosage was then never changed for 9 yrs. Decided to go gluten free in January this year. Feel better.. more focussed and less constipated/bloated.

Had palpitations early Feb and TSH was 0.30 (ECG was fine). Advised to lower dose to 100 which I did. 8 weeks later and I’m struggling with pains in my joints.. knees, ankles and lower back. Has become progressively worse during this period. Had thyroid bloods repeated 2 weeks ago and they were marked normal. Seeing Gp again on Thursday this week (she said they didn’t test my T3 2wks ago and lab might not do it). Wondering if 100 is too low or whether my body is just adjusting to having been on 125 for 9years but pain seems to be getting worse than better. Have taken ibuprofen for a week but made no difference. Also wondering if deficient in vitamins after going GF though would have thought joint pain would have appeared before now. Still having palpitations or missed/additional beats although not as frequent as February. I think GP might check rheumatoid antibodies on Thurs but I think pain coincides with reducing levothyroxine. If you are on levothyroxine, can you have antibodies checked to see if they’ve changed since I was diagnosed in 2005? Does anyone have advice re joint pain. Plan to get blood readings on Thursday. Thank you!

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I get joint pain when I need an increase, front of my knees and wrists are the worst

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Hi :)

It really helps to have your lab results to post like ft3 ft4 TSH ect . Often the same symptoms you get when hypo can be similar to hyper. Just because your recent tests were normal doesn’t mean they were optimal your body is telling you it’s not happy. Can’t tell if you are able to convert yr t4 into t3 very well which is so important in regards feeling good. I have hashimoto and I’m a poor converter so I take desiccated thyroid which already has t3 in it so I dint have to struggle with converting. Antibodies go up and down you certainly could have them tested again to see if they are very high ect. But you really need the results of ft3 ft4 to see what’s going on. Going gluten free is a good thing indeed regardless if your struggling atm. I have in the past gotten some minor but annoying joint and muscle pain from either being hypo or hyper and definitely heart palps in either situation. Always safe to check with a rheumatologist & I’ve been to the top ones everything was negative...it’s gotta be thyroid related most likely. I am presently going through a situation which brought about extreme muscle & joint pain especially when I had to increase my Levo ( which I take in addition to NDT) turns out it’s related to my diet very low carb. I state that to let you know various things effect our thyroid hormones and you will get to the bottom of this.

There are so many informed individuals on this forum who will be able to help you ..they have mega experience :)

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Thank you! That’s really helpful.

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Are you still on the low-carb diet , how long have you been on the low-carb and how does it fit your Hashimoto's . Recently diagnosed with hashimotos if you're doing the low-carb diet for six months. Don't think it's related but just curious about your lot don't think it's related but just curious about your thoughts

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Hello :)

Wasn’t sure if you were replying to me . Im new on this forum and still a little disoriented lol

No I discontinued the low carb diet just over a week ago ..I was on it from September to March and investigated it beginning of April .

My thyroid labs were bizarre during that period. Due to the metabolism slowing down and the abundance of rt3 being produced I went down hill. At first I really thrived on the low carb losing weight and feeling good. Then when the lab work reflected a problem meaning a need for med adjusting it was an impossible task due to rt3 . A normal adjustment of t4 brought about extreme joint and muscle pain & other hypo symptoms due to rt3 interference. Low carb diets increase rt3 it’s documented regardless of previous thyroid dysfunction or not ..but it seems many patients on thyroid meds suffer significantly more.

There are obviously many elements that influence thyroid hormones. Like anti depressants so readily administered without the patient being informed of the effects on thyroid labs. Many anti depressants compete with thyroid hormones thus reducing availability and raising TSH ect. Leaving the patient bewildered by hypo symptoms not knowing the interaction and how to make adjustments.

Yes the low carb diet had a huge impact on my thyroid hormones. There’s simply no doubt ...for some it’s minor..for some it’s a major.

We’re dealing with individuals and many particular components of their day to day life’s . However it’s yet another element ( low carb diet ) that should be carefully considered in respect to thyroid function. FIRST HAND 👋EXPERIENCE HERE Unfortunately .

:)

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(Rose) Just saw your response( ignore below) Lost 45 pounds on very low carb diet(6 months)and developed thyroid issues just now. My doctor told me not to change my diet. Thinks I may be iodine deficit. High TPO ab 1295(<60) wants to start me on nature throid low dose. I just started supplementing with iodine and do feel much improved( in that my throat is not throbbing ). When my throat would be I could feel my pulse rate jumping up-and-down with irregularities. And some generalized joint stiffness which I did not have. I'm thinking it's best to start the thyroid medicine but not really sure what to think .

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Hello :)

A very low carb diet regardless of it being keto or Adkins will effect people with even NORMAL thyroids. It is documented to cause a state of hibernation the body slows things down ..thyroid labs will represent this by showing higher TSH and also slower conversion of ft4 to ft3 conversion. Resulting in more rt3. Very low carb diets DO NOT cause thyroid disease , like hashimoto’s . That is an auto immune disease. However people with previous thyroid disfunction , or hashimoto’s can be impacted more significantly on a very restricted low carb diet. Everyone is different but I’ve read numerous testimonies and literature that can’t be disputed. I can unfortunately attest to this first hand. I’m presently trying to literally eat my way out of the mess I put myself in and slowly adjusting my meds. Trusting I can resume my original dose and neg physical symptoms will pass. I’m sure you read my previous post regarding low carb as it contains more details.

I’m unfamiliar with iodine supplementation other than my doctor originally told me to avoid it with hashimoto’s. My anti bodies have been higher than yours in past years and have waxed and waned over time. Thus effecting my thyroid labs and effecting my regular medication amounts. Not over 7 months like the low carb diet has though it was very apparent something was strongly interfering with thyroid labs unbeknownst to me at that time.

Wonderful you’ve lost 40 pounds 💪 however the diet has a great impact on our thyroid function and physical symptoms..join pain & various others symptoms. I’ve never experienced the throat throbbing. I’m grateful your doctor is considering putting you on nature thyroid meds if necessary rather than just t4 Levo ect,

I can’t even imagine any regular practitioner who would suggest iodine supplements as a first line application or thereafter natural thyroid medication. Kinda stunned as they always go directly to pharmaceutical t4.

What ever you choose to proceed with just keep in mind your only increasing the instability with a very low carb diet. Plus the end game may not be an easy fix. That’s my humble opinion and certainly not golden ,

Try to get others on this forum who are very adequately informed to give you some solid advice as well. :)

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Looking back I was probably having some symptoms of low thyroid when I was overweight, I remember I could feel some achiness in my joints and steadily gaining weight . This is why I decided to do the keto diet . Going in for a well check up is when all this developed. It was probably brewing for a whole and I was just unaware.( I've read low calorie was bad but didn't know low carb was bad as well). I am adding good carbs(squash/ fruit) I've not started any Med's yet as I'm still deciding how to proceed. I'm feeling well at present, since starting iodine supplements my Achy throat stopped, I don't feel any palpitations. Since I feel well I don't know if I'm going to start thryoid Med's. ( still waiting for my urine iodine-levels).

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:) That’s wonderful your feeling better!

You’ll come to a final decision on meds eventually.

Great your incorporating good carbs into your diet now. Got a squash waiting to be cooked here myself 😋

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How does a low carb diet effect Hashimotos? My doctor told me to continue my low carb diet, may start nature thyroid soon. Just curious what you've experienced with low carb? Just diagnosed Hashimotis.

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For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Recent obsession with bringing dose of Levothyroxine down to bring TSH up has left many, many patients in similar situation

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

If your GP wants to lower your Levothyroxine then they likely need to add prescription of Liothyronine (currently extremely expensive) and they would no doubt rather just increase Levothyroxine back up to 125mcg

Insist on vitamins being tested. Or get full private testing including FT3 and antibodies

Low vitamin D often causes joint pain

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My (historic) results are:

14/3/16 TSH 0.81 (0.35-5), T4 14.5 (9-21)

2/5/17 TSH 1.87, T4 16.4. Bandings as above.

10/2/18 TSH 0.3, T4 17.6. Bandings as above. Had daily palpitations (extra beat or missed beat.. not sure) so reduced dose of levothyroxine from 125 to 100 mg. ECG at hospital was fine.

Palpitations improved but experienced gradually worsening joint pain from early March.

27/3/18 TSH 1.17, T4 15.3 (bandings as above)

Had vitamin levels done yesterday (12/4/18) and results are:

Vitamin D: 29 (25-50)

B12: 297 (200-883)

Folate: 7.0 (3.1-20)

Ferritin 49 (15-200)

Have increased levothyroxine from today back to 125 to see if joint pain improves. Any comments gratefully received! Thank you

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All vitamins are too low

See SeasideSusie detailed supplements advice on many of her replies

Do you have Hashimotos? Are you on gluten free diet?

Always stick to same brand of Levo

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Thanks. I’ll take a look. Yes I’ve had hashimoto for 12 years. Started GF diet in Jan this year. Checked with pharmacist and brand of Levo hasn’t changed.

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Gheasley74

Vitamin D: 29 (25-50)

Is the unit of measurement NMOL/L or NG/ML?

**

B12: 297 (200-883)

This is too low. Check for signs of B12 deficiency here b12deficiency.info/signs-an... If you have any then further testing for B12 deficiency or Pernicious Anaemia may be necessary.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml 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."

If no signs of B12 deficiency then supplementing with sublingual methylcobalamin will raise your level, you could start with 5000mcg daily then change to 1000mcg daily when the first bottle is finished. When taking B12 we need a good B Complex to balance all the B vitamins and one containing 400mcg methylfolate will raise your low folate level - have a look at Thorne Basic B which is the one I used originally to raise my level from bottom of range to top of range, and still use as a maintenance dose now.

Folate: 7.0 (3.1-20)

This should be at least half way through it's range. B Complex as mentioned above will raise your level.

**

Ferritin 49 (15-200)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

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Vitamin D needs to near 100nmol. Better You vitamin D mouth spray is good with Hashimoto's as it avoids poor gut function. Also look at taking magnesium supplement when on vitamin D. Loads about magnesium on here.

Low vitamin D causes terrible bone and joint pain,

B12 and folate work together. A good vitamin B complex with folate in, plus you may also need sublingual B12 (eg Jarrow 1000mcg)

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Only start one supplement at a time and wait at least a fortnight to see any results (good or bad) before adding another

Ferritin, needs improving a bit. Eating liver once a week should help.

You never had FT3 tested before they reduced dose. Just looking at TSH is inadequate. Many of us with Hashimoto's are poor converters of FT4 to FT3.

Selenium supplements can help improve conversion too

Skipped bears can be low magnesium and eating a daily banana will keep potassium level good

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Can I just ask what brand of levo you are on as when I was put on Teva I rapidly went downhill with joint pains in lower back, hip, knees and shoulders and had palps as well. I am now on Mercury Pharma and sometimes Activis and feel so much better.

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Thanks. I’m on 100mg Actavis and was on 25mg MercuryPharma

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Hi Just back from a gp visit as I have been having skipped heartbeats on/off for past 6 months. On levo past 25 years but having anxiety and weight gain recently. Gp has referred me to cardiologist although I said maybe its my thyroid. So confused as they don't seem to take the thyroid seriously. Thank goodness for this website. I might tell her about it! 😊

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I have had the same kind of problems and after genetic testing found out that my Hashimoto’s and a genetic predisposition to methylation problems was the key to my heart palpitations and joint pains. Vitamins recommended were: Vit D, Selenium, Vit C, and a proprietary blend called Methyl Support. Also taking magnesium. The Methyl Support is methylated folate, B6, B12, and another B vitamin (don’t have the label right here).

Amazing relief unbelievable within three days ! My Hashimoto’s also occurred right after pregnancy but it took 10 years for them to diagnose . I take the T3 T4 combination and I’m here in the states. Her that you have a hard time getting it there and then it’s very expensive but it works so well . I’ve been taking the combination for 20 years plus . And it’s been a cheaper than aspirin for all those 20 years. Just yesterday I went to refill my prescription and a 90 day supply cost $145. Course insurance paid for most of that but what happened to our cheap supply? Of course we all know the answer that question . Keep reading here learn all you can you must have selenium to help with the conversion of the T4.

Please let us know how you do if any of this works. Enzymes too - you need digestive enzymes to help with proper metabolism along with the selenium.

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