I started 50mg Levothyroxine around 2 months ago. About 2 weeks in I started to have awful insomnia. I can't fall asleep until around 4 in the morning and then get up with my son around 6am when I take my tablet. I crash badly about 4pm and if I'm able to will sometimes have a nap then but it would only last about an hour and then the cycle continues.
I'm assuming as it came on with the meds it's related. My appetite has also gone through the roof. I feel hungry constantly.
GP wasn't concerned but they never are! Will this settle down or shall I push for it to be looked into? I'm having a blood test in 4 weeks to check my thyroid function and will have a follow up appt the week after with the GP.
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Can you please share with forum members your blood test results at diagnosis and the reason why you have been diagnosed hypothyroid and prescribed T4 - thyroid hormone replacement.
These would look like a TSH + T3 + T4 result and range + if the thyroid antibodies were run -
TPO - TgAB - TRab - TSI - with a number and if any over the range shows the reason for your current health issue, or maybe written as a TSH thyroid Receptor antibody reading and single number and cut off range ?
I would certainly want answers as to the insomnia as it is so debilitating - and the increased sense of hunger - T4 thyroid hormone replacement is meant to be relieving your symptoms - not giving you more -
What symptoms originally took you to the doctor ?
It could just be that' brand ' of T4 medication doesn't suit you - it might be something else - but you can't continue like this - and we haven't enough information to say much more -
Follow up bloods should be run at around 6-8 weeks from any dose increase of T4 Levothyroxine as it takes time to settle in the body and it reads as though it's about that time now -
Maybe get an appointment to get the bloods run now and also an appointment to speak with the doctor as you can't continue as you are.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva 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
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
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).
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
In autoimmune hypothyroidism the output from the thyroid can be very erratic with hormone levels jumping up and down, especially fT3. I would ask your GP to measure your antibody levels to see if they are very high.
Thank you for the replies. I was originally diagnosed as subclinical after being referred to endocrinology with a large goitre and high TPO levels. This settled after about a year of fluctuating and I was discharged with the letter saying it was autoimmune thyroiditis. Very shortly after being discharged I had severe fluid retention and the GP sent me for a raft of blood tests which showed I had tipped into full blown Hypothyroidism (although initially they wanted to wait and watch). Below are the results from those bloods 2 months ago. They didn't test T3. The next blood test is only testing TSH and T4:
TSH - 11.16 (normal range 0.55 - 4.78)
T4 - 12.9 (normal range 11.5 - 22.7)
Serum Albium - 50 (normal range 35-50)
Serum Total Protein - 80 (normal range 60-80)
Serum ALT - 12 (normal range 10-49)
Total Alkaline phosphatase - 55 (normal range - 30-130)
Mchc - 310 (normal range 315-345)
Haematocrit - 0.473 (normal range 0.360 - 0.460)
RBC - 4.90 (normal range 4.10-5.10)
Haemoglobin - 143 (normal range 120-150)
HbA1c - 36 (no range given)
Hypochromasia 9% (no range given)
Erythrocyte Sedimentation Rate - 13 (normal range 0-12)
No that's not been mentioned. Previously I was told it was low but acceptable and that I was folic and B12 deficient and prescribed 5mg folic acid. I've just finished that course of folic acid.
SlowDragon Thank you this is very interesting! The brand is Teva. I'm pretty certain I've had this brand since starting treatment. Does the GP specify the brand on the prescription?
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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.
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
I'm using the BetterYou B12 and Vit D spray and have just been taken off prescription folic acid. I also take 60mg of Elvanse for ADHD an hour after I take Levothyroxine. I'm not sure if it effects how it's released but because of shortages in recent months I've been having my dose made up of 30mgx2 or 40mg+20mg instead of 60mg
Insomnia is just as likely due to your very poor vitamin levels. Have you been tested for coeliac disease? If not then ask GP to do that.
Now you've finished the folic acid prescription you will need to buy your own supplement otherwise your levels will fall straight back to where they were before.
Recommend a good methyl B complex to help keep all the B's in balance.
B complex suggestions: Slightly cheaper options with inactive B6:
Brain chemistry changes caused by a thyroid issue can also mimic or worsen symptoms of ADHD or ADD. This is potentially one of the reasons that thyroid disease goes undiagnosed. Thyroid symptoms related to memory and focus are similar to ADHD or ADD, causing many doctors to treat their patients for those conditions instead of diagnosing and treating an underlying thyroid condition.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
I have had severe insomnia for years & tried just about everything to help it. Melatonin can help. My GPs can prescribe it, you can ask or check your local health authority’s formulary online. It tells you what is available where you live. Unbelievably it varies.
Alternatively you can order many different strengths from Biovea online. I found the 10mcg slow release tablets helped me most. This is a higher dose than the nhs provides. You can’t buy melatonin in the UK but I’ve had no problem with Biovea, very efficient despatch from Europe. They sell their version of Nytol very cheaply too.
Antihistamine Nytol is available over the counter at the chemist & can certainly help. I’ve found that they don’t lose their effectiveness,as they say they do, either.
I find that listening to a story or boring documentary can work brilliantly. I did it this morning when I woke at 4am. BBC sounds app has lots of choice. Don’t choose a story that’s too interesting though as you’ll probably lose the plot.
Lavender oil on your pillow & other essential oil mixes help too.
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