I am 39 years old and was diagnosed with hypothyroidism just over 2 years ago after going for a blood test for fatigue. No other symptoms than that at the time.
Last July I went to the GP as felt ill- tingling in the arms, weakness, headaches- my TSH was 12.6 so the original prescription was increased from 25mg to 50mg of levothyroxine.
I went back in November for a blood test with a TSH of 5.25- despite feeling fine I was increased to 75mg. Within around 2 weeks of the dose increase I experienced lower back pain which and sore wrists which at the time I didn’t connect to this possibly being related to the dose increase. Back pain hasn’t been an issue before.
In January this year I had a Thriva blood test as just didn’t feel right with fatigue, continuing back pain, ringing ears and tingling hands and forearms. The results are attached.
In light of struggling to get an appointment with my GP to discuss the results I arranged an appointment with a private thyroid clinic who based on how I was feeling and the Thriva results increased my dose to 100mg (I take the 75mg from GP and 25mg of a different brand to make up the 100mg). They want to review my bloods in 3 months. They also suggested taking vitamin D, selenium and zinc and folate which I am implementing. I have been on the 100mg for just 2 weeks and still don’t feel great (patience is not my thing).
I have also finally managed to get a telephone appointment with my GP but really at a loss as to what I should be asking for and if my dose is too high or whether I just need to give a few months for the 100mg to kick in.
I have no other “known” medical conditions other than vitiligo which I have had since the age of 11. I am at a loss as to what I should be suggesting to the GP- is the increase in dose causing side effects/ making me feel worse? Looking for some direction.
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Zanne60
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High TPO antibodies confirms autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Are you in U.K.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test and maintain GOOD vitamin D, folate, ferritin and B12
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Exactly What vitamin supplements are you taking
They also suggested taking vitamin D, selenium and zinc and folate which I am implementing
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)
So January test results above were when on 75mcg daily
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you did this test ?
I have been on the 100mg for just 2 weeks and still don’t feel great (patience is not my thing).
No point seeing a consultant until you have new test results after 8-10 weeks on 100mcg
Which brand of levothyroxine is your 75mcg and which brand is 25mcg
Many people find different brands are not interchangeable
Poor gut function with Hashimoto’s 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-6 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Thankyou so much for your time and informative reply; as to your questions-
1-UK based- yes although I have never discussed the condition with my GP, even when diagnosed. I was told it was as simple as take the prescribed Levo and you will be fine. This is why in Jan I got my own Thriva test and then spoke to a thyroid clinic. I wanted to be better informed.
2) Supplements- started taking Pharma Nord combined zinc and selenium about a fortnight ago , vitamin D (2000 IU) and folic acid (note you say the latter shouldn’t be needed- should I stop taking this? ).
I also periodically take magnesium and omega 3 as per Thriva’s advice and MSM. I don’t take anything within 4 hours of the levo other than lemon water and after an hour a couple of boiled eggs for breakfast. I do take the contraceptive pill about half a hour after the levo- is that a problem? Take the supplements at night after dinner. I think it is sensible what you say re B vitamins and will order some. It is strange getting used to the volume of supplements but if it helps me….
3) Timing of blood test- the last one was about 6.30am (Thriva where I screen shotted the results) and hadn’t taken that days Levo. Wouldn’t have been on any supplements other than MSM. When the GP take bloods it’s whenever they can fit me in and offer no advice re timing.
4) Brand- the 75mg are Teva and 25mg Wockhardt. I always used to request Wockhardt when I was on 25mg as I thought I got on better with that. With the 75mg it differs as to what brand I pick up from the pharmacy each month. Would I be better asking for 4x 25mg of Wockhardt?
5) Diet- my husband eats a dairy and gluten free diet and I eat what he eats save for the odd slice of cheese. I would say I have a healthy diet.
6) Ferritin- I didn’t get that tested with Thriva (I was trying to best work out what I needed to test for) but my July 2024 GP result said this was low and to eat more red meat etc. The NHS app doesn’t give a figure.
Again Thankyou so much for your time and help- if there is anything you can add to the above please do.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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).
1-UK based- yes although I have never discussed the condition with my GP, even when diagnosed. I was told it was as simple as take the prescribed Levo and you will be fine.
Well that’s what many of us were told
You were started on too low a dose and left far too long on only 25mcg Levo
Standard starter dose is 50mcg and bloods retested every 2-3 months and dose should be increased as fast as tolerated to bring TSH below 2
Most patients on levothyroxine find their symptoms improve when TSH around 1
Thankyou, I did wonder this. I am going to try and discuss with my GP- I am not sure whether this ties in with the thyroid issues or is entirely separate.
When my estrogen is too low the first symptoms I get are achy stiff joints and sore weak muscles, especially first thing in the morning or after sitting awhile.
Edited to add: early on I used to get headaches that lasted all day or a few days that coincided with hormone changes around ovulation. My body didn't handle well the more dramatic changes of early perimenopause.
Some people have an intolerance of high levels of FT4. I am one of those people. Your results show FT4 high in range and a hash differential between FT4 and FT3. In other words, you’re not converting T4 to FT3 and this will cause you to feel very fatigued.
There is no ‘correct dose’. The dose which makes you feel well is the right one. I don’t think you’re going to achieve that on Levothyroxine alone. A small amount of T3 will increase your FT3 and lower FT4 as well as reducing TSH to an acceptable level. You’ll need to drop Levo a tad before adding T3.
I think that your GP has increased Levo in the hope of raising FT3 and reducing TSH which, as said elsewhere, should be at about 1. Where there’s a conversion issue this won’t work. Raising Levo will raise FT3 but at the expense of an unacceptably high FT4.
The symptoms You describe are consistent with high levels of FT4.
A referral to an endocrinologist who is ‘T3 friendly’ will probably be a good way forward.
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