After a seven years long journey and the fight of my life I am on Levothyroxine, 125 mcg, the brand being NorthStar. I am so much better and have much more energy.
My results from Dec '20 were FT4 17.8 and TSH 0.09. Results from Nov '19 were FT4 19.3, TSH 0.75 and FT3 4.8.
It wasn't until I had private blood tests for TgAB and TPO AB, which were both high, that a consultant started me on a trial of Levothyroxine 25mcg. They finally agreed that I had Hashimotos Thyroiditis.
I also did the Regenerus DIO2 gene test which showed that I had one of the genes which Thyroid UK suggest causes resistance to T4 conversion. The consultant did not give any credence to this test though.
This disease ended my career as a primary school teacher. As the thyroxine has been increased the days that I can teach has built up to 3 a week and I did do seven weeks full time a year ago which brought me to my knees.
I am ready mentally for full time work, but as I've found in Winter my energy levels plummet and the aches and pains return with a vengeance along with the 'plug pulled out' sensation between 4 and 6pm.
I have a video consultation with my endocrinologist a week today, Thursday 21.01.21, and would like to be able to persuade him to raise my dosage again. Could anyone give me some information to help me back up this request?
Thanks in anticipation.
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MTKW17
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
Sounds like you have low vitamin D (winter joint pain)
What vitamin supplements are you currently taking
When were vitamin levels last tested
Have you had coeliac blood test
Are you on strictly gluten free diet and/or dairy free diet
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Vitamin D: 96 - I am taking 90mcg (3600 IU) split morning and evening.
Vitamin B12: 633 - I am taking 500 mcg a day
Folate: 16.2 - I am taking 400 mcg a day.
Ferretin Level: 52
Coeliac, down to be tested, but no result on printout.
The blood test was taken less than 24 hours after the thyroxine, but more than 12 hours. I normally do have a full 24 hours before my blood test. The test was taken at about 11 am, I normally have them as early as I can. The vitamin supplements were being taken at the time, so my natural levels are lower than the results.
The results I have do not specify the measurement of any of the results or give me the range so are nearly useless for me.
If I had the bloods taken at 08:30 my TSH may have been higher, but I understood the optimium replacement would be TSH suppressed and FT4 at the top of the range or slightly above? If this is correct then I aught to be able to get the levothyroxine increased again I would have thought.
Accord don’t make 25mcg. So you will need to get extra 50mcg and cut in half or 100mcg and cut into 1/4’s
2) rather than just folate (or is it folic acid?) recommend 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
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
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Before considering adding T3 we need all FOUR Vitamins at OPTIMAL levels
With Hashimoto’s that frequently means supplementing virtually continuously to maintain optimal vitamin levels
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Getting vitamin levels tested is FIRST STEP
Strictly gluten free diet often helps or is absolutely essential
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I should have a coeliac blood test result from 02.12.20, but it is not listed. I would like the T4 increased to 150mcg from 125mcg. I am not looking to add T3 at the moment as I know that being prescribed that is like getting blood out of a stone. I am going to call the consultant's secretary today to ask for the results with ranges and chase up any that are missing.
I am on Levothyroxine, 125 mcg, the brand being NorthStar
I assume this is dispensed as a 100 microgram tablet and a 25 microgram tablet?
If so, look at the packets and Patient Information Leaflets very carefully. I think you will find the 100 is made by Accord and the 25 by Teva. With very different formulations.
If you get on with them, as it appears, fine. But not everyone finds all makes tolerable. And if your dose were to be increased, say to 150, you would likely see a change in manufacturer.
That is difficult. If you are fine, then nothing need be looked for!
But quite a number of people find lactose-containing levothyroxine seems to cause stomach and digestive issues. And another number find Teva, a lactose-free make, causes stomach and other issues!
If you have neither, there is no problem. But at least you are now aware.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
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