I was feeling terrible last year and the GP kept dismissing me. Then in desperation I pleaded for something to be done so I was sent for blood tests. A doctor telephoned and said my thyroid was hypo and to retest in 8 weeks. I did and they telephoned again and said my results were worse and due to a heart condition started me on 12.5mg of levothyroxine, increasing to 25mg.
They didn't contact me about retesting my levels once on levothyroxine. I only discovered from here that I should, so I sent a message asking for another blood test, nearly 3 months later, which was last week. To my shock from having learned a lot from you, my test results arrived today. They only tested TSH and there was a message to stay on 25mg levothyroxine and test again in 12 months. These were the results which are in range.
TSH 3.43 miu/L (range 0.35 - 4.94)
How do they know if they haven't tested the other things or is this ok? Throughout this they have never even seen me. I do feel better than I did as I felt terrible but I am still not the old me. Have I read too many of your posts and now worry this isn't right when I was expecting lots of results with T4 and T3 etc?
I would be grateful for your advice.
Written by
Dhalialover
To view profiles and participate in discussions please or .
Make an appointment with GP or write email/letter requesting next increase in Levo to 50mcg daily
If GP won’t increase, request/politely insist on retesting thyroid including Ft4 and Ft3
Which brand of levothyroxine are you currently taking
Don’t change brand as you increase your dose
Initially you probably want to increase by only 12.5mcg to 37.5mcg ….cut a 25mcg in half to get 12.5mcg
ESSENTIAL to get vitamin D, folate , ferritin and B12 tested
Ask GP to test these and to test TPO and TG thyroid antibodies for autoimmune thyroid disease
Or test privately
ALWAYS test thyroid levels 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
Testing options and includes money off codes for private testing
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
Thank you so much. I am pleased you agree this seems odd. I have all those symptoms. Last year I was falling asleep straight after work and at the weekends I could sleep 16 hours straight and I described it as coma sleeping as it was so deep. The fatigue was terrible and took two hours each morning to come round and a hot bath to ease the muscle aches and stiffness. My hair is so thin now and used to be super thick and I used to be a keen walker and gardener and last year just looking at the garden overwhelmed me. I was swerving the car as I nodded off and the final straw was when I crashed (only the car was hurt). I also had terrible constipation. Also an incredibly low heart rate so I had to have a procedure without sedation. The cold also causes me terrible pain and that hasn't improved as it is warmer but I still hurt with the cold. I am covered in burns on my stomach and hands from needing to have a hot bottle so close. The fatigue and aches have improved but I cannot do a 10 mile hike anymore. Just a short walk last weekend due to my improvement needed an afternoon nap. They kept saying it was anaemia as I have always been anaemic. They also said I was depressed but I was too tired to care about anything. My last two TSH results were 5.89 and 6.09 so I can see the improvement, but I will make an appointment and ask for a better review. I also kept choking when I ate and I assumed it was acid but that has also really improved so clearly I had symptoms I had never linked to thyroid. Many thanks.
If necessary request “trial increase “ to 50mcg - this is only the standard STARTER dose
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you so much. I weigh 48kg so by your calculation I need to work up to 75mg of levothyroxine. I was 45kg when I was fitter before the fatigue set in. I have been anaemic with every blood test since I was a teenager. The best I have ever been is just within range. B12 has always been high and Vitamin D has been fine since I started supplements. I will make an appointment with the GP and raise all this. Thank you so much for all your help. I am very grateful.
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 3-5 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 264
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.
Hi, this is so helpful. I am sure I am anaemic again now as I haven't taken any iron medication in 6 months. They took me off it when I reached this highest record level below as I am normally below 30 but it sounds like this is still too low.
Serum Ferritin 37 ug/L (range 3.0 - 250)
I have had so many tests for ceoliac disease, crohns and ulcerative colitis. I always test ok although a gastroenterologist said something is wrong just not enough to be any of those so he diagnosed severe atopic gut dismotility (ibs). I really struggle with food, even gluten free. Not much stays put so I have always been slim or underweight.
I will definitely ask for an iron profile as well as full thyroid profile.
I have had so many tests for ceoliac disease, crohns and ulcerative colitis. I always test ok although a gastroenterologist said something is wrong just not enough to be any of those so he diagnosed severe atopic gut dismotility (ibs). I really struggle with food, even gluten free. Not much stays put so I have always been slim or underweight.
So it’s likely you do need to be gluten free
Have you tried this ….if yes….how long for
Thyroid patients can also react to nightshade family - potatoes, aubergine, peppers
You should find getting thyroid levels improved will help with poor gut function and poor absorption
"Tests for follow-up and monitoring of primary hypothyroidism
1.4.1
Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine.If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2
Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Adults
1.4.3
For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised(2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4
Considermeasuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine."
You have received great advice from other members. I just wanted to add ‘hang in there’ and keep posting to let us know how you are getting on Dhalialover 🦋
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
test results query 
test results 
Latest Thyroid function test results
Blood test results
new test results and dose review advice.
