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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Gheasley74
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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
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
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
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.
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...
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
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.
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! 😊
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
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.
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.
(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 .
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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