I am really worried about my GP reducing my levothyroxine. I am 39 years old and I've had an underactive thyroid for over 10 years now. I started out on 25mcg levothyroxine and over time have moved up to 100mcg.
Recent blood test results have been unchanged. My TSH is virtually suppressed (0.01), T4 is 16.2 and T3 is 4.6.
I feel my T3 is still a little low, even with a suppressed TSH. I do feel reasonably well though.
My doctors want to reduce my thyroxine as they think my TSH is too low. I am particularly loathed to do this as I am trying to conceive and believe T4 and T3 levels should be in the upper levels of the reference range while a baby is developing.
I spoke to an endocrinologist via a NHS referral and he seemed to agree with my GP, and told me that the only value of importance is TSH and that mine is on the low side. He also told me that they are thinking of getting rid of desiccated thyroid as a treatment on the NHS as it doesn't achieve anything...
Is there anyone out there that can tell me if my levothyroxine should be reduced? I am really not convinced.
I'd happily pay to talk to a private enodcrinologist who really understands this stuff. I just don't know where to find one.
Hope someone can help as I am so worried reducing my meds will greatly impact my chances of having a baby (and I am quite old anyway in pregnancy terms).
Emily
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Emily78
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It's good to know I am not going crazy. I've done a lot of research on this over the years and it seems you really have to look after yourself where your thyroid is concerned (because the doctors won't do it for you!).
I had my blood test at 08:30, and took my thyroxine AFTER the test. I do normally take it in the morning though so might try evening as you suggest. It doesn't impact your sleep or anything taking it at night? Do you leave a gap between eating and taking it?
I don't bother with watching what i eat and taking my T4 as this doesn't affect me. some people really notice an issue though. However, i take mine at bed, so usually i haven't eaten for about an hour before.
It doesn't affect my sleep and probably improves it. Lots of people find this a help. We make our thyroid hormones when we go to sleep, so all we are doing is replicating what the body would do naturally. This has the added benefit of making more cortisol as this is made in the second half of the night.
Very often low thyroid people have low cortisol levels. So if you give the thyroid at the correct time you can improve cortisol and so up metabolic rate.
The addition of a small amount of T3 would probably work wonders for you. I would really look at getting some T3 on the net. The main thing with T3 is to use a small amount because very often these are more powerful than the bigger doses. I am talking about 1/2/3mcg. I take a 1/8 of a 25mcg tablets and so this = 3mcg roughly.
Certainly worth a try. so many people jump on to T3 and start to high and they zoom past their sweet spot.
It’s unlikley as all gps are trying to get their patients off t3 if on it already. It’s all to do with the over pricing of the tablets but this may have a positive outcome after yesterday’s national news coverage of the rip off by Concordia over the nhs t3
I've started taking my T4 at night as per your suggestion. It's going well so far (good sleep!) but early days.
I am going to do a load of blood tests as suggested by others but was wondering when to take my T4 around the blood test now I'm taking it in the evening. Do you skip the night before and then take it in the morning after the test?
Some people like to leave 24h's between blood tests, but i personally won't be doing. I am having some tests done quite soon and i will just take my T4 and T3 as normal at bedtime. I might take them a little earlier as normally take at 11pm.
You are only on 100 T4 so it isn't a hug amount so i can't see it affecting things to much.
You can of course skip the bedtime and take them after the test and then take the normal dose that night. If you do this it will also highlight how well T4 works at bedtime compared to morning. If i have missed bedtime meds i just don't feel as good the next day.
One more question... I am looking at buying some T3, and have found 25mcg tablets like you use (the brand I am looking at is Tiromel; do you know if this is OK?). Just wondering how the heck you would divide a 25mcg tablet into 8 to achieve such a small dosage?!
He also told me that they are thinking of getting rid of desiccated thyroid as a treatment on the NHS as it doesn't achieve anything...
That's a load of rubbish for a start. People used to die, slowly and painfully, of hypothyroidism before the development of NDT. It was common for people to die in lunatic asylums because the brain is a major sufferer when thyroid hormones are low. But after people could get NDT they could lead normal lives of a normal length.
NDT contains thyroid hormones and this is clearly shown by the fact it changes hormone levels in blood tests, and it obviously does achieve things, so how can the endo say it doesn't achieve anything?
I must admit I actually thought that prescriptions for NDT were as rare as hens' teeth in the NHS, so I'm surprised that he even mentioned it.
Personal anecdote :
I went through IVF in an attempt to get pregnant. I was told during my first treatment that my thyroid was "borderline underactive" but they decided I didn't need to be treated for it. I actually got pregnant three times in total and then lost them all. I have wondered ever since whether I might have succeeded in having a child or children if I had been treated for my thyroid problems.
If you consider yourself to be quite old for getting pregnant then I think you might have more success if you self-treated to get your thyroid hormones up to optimal levels, because you could do it far more quickly and successfully than a doctor could. If you wait for doctors to treat your thyroid properly you might be waiting for ever.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
If you have Hashimoto's, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins.
Low vitamin levels stop thyroid hormones working.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
You are not over-medicated, so please don't accept any reduction in your medication. As others have already advised, you may actually need a little more. Maternal and foetal health depend on optimal thyroid levels, so now is the time to charge of your own health care.
Thursdays are a good time to buy discounted private tests from the providers SlowDragon mentioned. When you have a full set of blood test result, start a new post with the results and their reference ranges, and people will be able to advise you further.
FT4 and FT3 levels are fine. TSH 0.01 is suppressed but according to Dr. A. Toft some people need TSH suppressed to have adequate FT4. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
My TSH has been suppressed <0.01 since 2012. I have had 3 dose reductions over 2 years which dropped FT4 and FT3 but didn't budge TSH. Endo would prefer to see it at 0.05 and is concerned that over suppression increases my risks of developing osteoporosis and atrial fibrillation. I've declined further dose increases because I prefer to feel well now although I accept that I may experience adverse health outcomes in the future.
This link finds no association between TSH and atrial fibrillation but doesn't address osteporosis. press.endocrine.org/doi/abs...
The TSH of women planning conception should be in the low-normal range 0.4 - 2.5. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal develop-ment. NICE also recommends that hypothyroid women planning pregnancy should be referred to endocrinology. cks.nice.org.uk/hypothyroid...
Management of primary hypothyroidism: statement by the British Thyroid Association Execu-tive Committee
13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific refer-ence range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first tri-mester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).
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