I have been on levothyroxine for 5 years. I have never got on well with it. I started off on 50mcg and moved up to 75mcg. I was OK on the 75mcg for about 3 years. My results were stable but I still had a lot of the hypo symptoms but it was better than when I first got diagnosed.
Over the last year my endo has increased my dose to 85ncg then 100 and about 6 weeks ago to 125mcg. I feel awful. I feel wired all the time, I can't remember things. My breast are extremely sore and I can't wear any bras with an underwire. Any clothing that touches my skin causes discomfort. My weight has gone out of control despite what I do with my diet.
I need help. I spoke to my GP and they are sympathetic but they aren't helping me. My endo is nice but I feel like he is not listening to my problems.
My latest results are:
T4 28.7
T3 not measured
Tsh 0.03
Prolactin 514
I take liquid thyroxine as I couldn't tolerate tablets, possibly due to the lactose they contain
A help will be greatly appreciated 🙏
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Lisaannette
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Recommend getting FULL thyroid and vitamin testing done
Many people can’t tolerate over range Ft4
Do you split your liquid levothyroxine into 2 smaller doses waking and afternoon ….often gives better results
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 plus both TPO and TG thyroid antibodies tested.
Do you know if you have autoimmune thyroid disease diagnosed by high thyroid antibodies
90% of primary hypothyroidism is autoimmune thyroid disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
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 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
I had some bloods check about 2 months ago. The results were as
Ferritin 30
Vit b12 574
Folate 8.1
Hb 125 (best it has been)
Not sure about the Vit D but when I have checked it before the results were in the sufficient range. I do take vitamin D tablets daily (not prescribed).
My T3 was checked about the same time as the above. It was 3.9 and the T4 was 12 at that point. My TSH was around 7ish which is when the endo increased my meds.
I take my medication in one dose usually in the morning at the same time.
My endo told me my antibodies test came back normal. He says I have central hypothyroidism but didn't say the cause.
I had a celiac test too and that was negative, but I feel better avoiding gluten. I try to avoid but completely, but I have been caught out on occasion when not checking food packaging.
The main problem is my weight and sore boobs. I feel so uncomfortable in my skin. I have a really busy job and I can't concentrate on my job because of the discomfort.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
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
Thank you for this. I will try get more iron into my diet. I don't eat a lot of red meat and the dark chocolate sounds like something I could definitely manage 😊
Even with lowish FT3 I could never tolerate over range FT4, which is what you have. I suggest you get a home test kit from Monitor My Health (it's an NHS lab) and do the TSH, FT4 and FT3 early one morning before you eat or drink anything and before your meds. You need current results to work with.
You can ask your GP for the other tests. Ferritin is way too low. You will need supplements for that, but you should ask them to check for anaemia first.
I think you should leave them alone and get a test kit and do the test. Then come back with the results and ranges for all 3 blood markers and we can have another look. Without a test it's just guessing really.
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Why is my TSH rising when levothyroxine dose increased?
Drop in FT4/FT3 and TSH after levo increase
Is it normal to feel terrible after increasing Levothyroxine dose?
Increase in levothyroxine decrease in tsh
Half life of levothyroxine after increase
