I was diagnosed with under active thyroid in September and started on 50mg thyroxine. I have been symptomatic for a while (a few years), but was sent for bloods as my periods have gone nuts, results came back as TSH 8.7 and T4 14.8. I have also had a neck ache/headache pretty much constantly since the beginning of august that no amount of painkillers, massage, physio has helped with. I believe it’s my thyroid causing the neck pain,.
After a couple of months on thyroxine, I started to feel at least 50% and my neck ache/ headache subsided to a bit achey on and off throughout the day and actually went completely for 3 days. Since the beginning of the year though, my symptoms have started to return and my neck ache and headache is back full on constantly. I have had to fight my GP to get me a blood test which came back as TSH 1.4 (.27-4 range), but didn’t test T4, so I asked if they could do it again and test T4. They again only tested TSH, which was 2.4 .27-4 range).
I have had my own bloods done on 24/01/23. Results below
it is common to feel a bit better for a little while , and then less good again , when on the first doses of levo ...as doses are increased the 'better' bits should last longer, and the 'less good again' bits will not be as bad.
The problem is some GP's don't understand why 'anywhere in range' is not quite good enough ... we usually need 'optimal' if we want to feel properly well again , not just 'anywhere in range will do' and some people get left on not quite enough for far too long .
~ to support your request for "a trial increase to 75mcg to see if it helps your symptoms" .... all of them recommend GP's keep TSH between 0.4/0.5 and 2/2.5 in patient on Levo ... some of them are taken directly from UK GP's 'update' sources... and one of them was written specifically for GP's by NHS Specialist Registrars in Cardiology and Endocrinology ... so there should be no argument about there validity.
There is no way your GP can know for sure that an increase to 75mcg will take your TSH lower than 0.5 unless they try it .. and all these references tell them it is perfectly safe to have TSH at 0.5
so use these to get dose increases for now ... hopefully you get to the 'right dose for you' before your TSH goes lower than that .
most people end up needing somewhere between 75mcg and 150mcg before they feel consistently better.
*Note ~ for all thyroid blood tests it is very important to get an early morning blood draw (as close to 9am as possible) this give the highest TSH level in the daytime ,
also take the last dose of levo 24hours before the test .. and take that days dose after the test.
and do not eat breakfast before the test .
The reasons for this are explained in two studies which you will find in the first few replies to that same post.
Hope that is some help ... there will be more people along tomorrow who can help you with the vitamin results .. i'm not very good with them .
hello - and just to add that your vitamin D should be higher in range and your ferritin is very low, so some supplementation is indicated there. Are you taking any supplements?
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.
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
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Many GP’s seem to think if you’re only a “little bit hypothyroid” you only need low dose Levothyroxine …..this is incorrect
Levothyroxine doesn’t “top up” low thyroid, it replaces your own thyroid output. So almost everyone on levothyroxine should be on (or near) full replacement dose levothyroxine
This is usually approximately 1.6mcg levothyroxine per kilo of your weight per day
Approx how much do you weigh in kilo
50mcg is only the standard STARTER Dose levothyroxine. Dose is increased slowly upwards in 25mcg steps, until symptoms are resolved and TSH is always below 2
Most people when adequately treated will have Ft4 at least 70% through range. Ft3 at least 50-60% through range …..usually TSH will then be around or under 1
Importantly all four vitamins at GOOD levels
Low vitamin levels tend to lower TSH
Important to maintain vitamin D, folate, B12 and ferritin at good levels
Is there someone who you could take along to your appointment to help you speak for yourself or advocate for you? If thats not possible then perhaps write down what you would like to say and give that to the doctor. That allows you to remember everything and make your point fully.
Find a helpful GP at the practice and ask them for the increase. Some GPs are more tricky than others.
Thank you all so much for all that info, especially slow dragon, that is absolutely amazing and I really appreciate that you have taken the time to send this over to me.
I currently take Vit D3/K2 in an oil type thing each day, but have just bought the spray suggested as that oil i am taking is disgusting and I burp it for the next 24 hours til it's time to take it again! I also have started in the last couple of weeks taking ferrous fumerate that I had an old prescription for (still in date). My plan is to get my levels all up to the top 3/4 in the range for vits and see how I am with that. My Vit D was 41, so it is slowly getting better.
I weigh 61 kilos, so, I think I should eventually settle around 100mcg thyroxine. The brand they have given me is TEVA.
Also, really intersting the autism/low thyroid link, again, thanks.
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