Starting Levothyroxine

[Gosierunn]

Hi all - I am new here. I have have been having my thyroid tested for nearly 3 years complaining to the dr about symptoms but they have continued to do 3-6monthly checks. Initially my TSH levels were much more elevated following the birth of my son - hence the watch and wait, they did decrease but have hovered above normal range (but subclinical) . They finally checked my antibodies which are very high 2000 so have concluded they should try me on Levothyroxine. I suffer with severe health anxiety so whilst I found the info on here super helpful and brilliant reading the posts do trigger me / make me really anxious. I just wondered if there are positive stories of folks being prescribed Levo and it improving symptoms and being managed well. I understand the need with autoimmune to go gluten free / dairy free / soy free and am currently reading Dr Isabella Wentz’ books - so appreciate that it not just about the drug fixing everything. I had my bloods taken last week again as asked for them to be taken at 9am (with only water prior) before they make a decision about what levels. She initially said they work start with 50mg and then backtracked and said 25g - I feel a bit worried about the indecision and what impact the starting dose could have on me. I can report back when I have the results but just wondered if folks are happy to share their experiences.

[Gosierunn]

Also to say have had B12, Vit D, Ferritin etc tested and have sent off for a medi check for magnesium and cortisol levels tests.

[SeasideSusie Remembering in reply to Gosierunn]

Gosierunn

If at all possible I would suggest that you cancel the cortisol test. The Medichecks test is not a good one. The best test measures cortisol plus DHEA, this is because DHEA is helpful in determining the stage of adrenal fatigue if present. Regenerus and Genova Diagnostics offer this test:

thyroiduk.org/help-and-supp...

Also, Medichecks reference ranges for cortisol leave a lot to be desired. Ranges are based on the levels of healthy people. Two of their ranges have zero as the lower limit. If anyone did have a level of zero, they would be very far from healthy.

Also when the result says <1.5 then there is no actual result. It could be anywhere between 0 and 1.4. In particular, for the bedtime sample if it was nearer the low end the level would be good, if it was nearer the high end it would be too high.

Is the magnesium test a serum test or a red cell test? Testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.

A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test. The red cell test is expensive and requires phlebotomy which is why it's not included in these bundles.

If you want to read the science, this information is from this article:

ncbi.nlm.nih.gov/pmc/articl...

[Gosierunn in reply to SeasideSusie]

Thank you SeasideSusie ! I literally just cancelled them in the nick of time! Thank you for saving me nearly £100! I had ordered the thyroid panel one from medicheck - do you know if that’s a reasonable one?

Will look at the provider you recommend for the cortisol / adrenal test.

Would my GP be able to do a red cell magnesium test?

[SeasideSusie Remembering in reply to Gosierunn]

I had ordered the thyroid panel one from medicheck - do you know if that’s a reasonable one?

What's included? There might be a cheaper option if just basic thyroid test.

Are you using our discount codes (click on test provider link to see discount code):

thyroiduk.org/help-and-supp...

For the cortisol/DHEA test, I've used Regenerus because they email you direct when results are ready, Genova Diagnostics send them to ThyroidUK who release them to you when you've filled in their Test Results Form so can take a little longer.

Would my GP be able to do a red cell magnesium test?

I don't know, you could ask but be prepared to be quizzed as to why you want it!

[SarahJane1471]

welcome

I too have health anxiety so you are not alone. I know how scary this can seem but this group is exceptionally knowledgeable. My advice for now is keep reading and gain as much knowledge as you can. The more you understand the more relaxed you will feel about you health. Knowledge is power …. really .

When you get the results of your next blood tests post them here and ask for advice.

You are starting a thyroid journey so take your time to understand before you make decisions

Sarah

[Gosierunn in reply to SarahJane1471]

Thank you SarahJane1471 ❤️

[SeasideSusie Remembering]

Gosierunn

I suffer with severe health anxiety so whilst I found the info on here super helpful and brilliant reading the posts do trigger me / make me really anxious. I just wondered if there are positive stories of folks being prescribed Levo and it improving symptoms and being managed well.

Please be aware that this forum exists to help people who do not get well on Levo alone. We do have a large membership over time and there are about 9,000 regular members reading and much fewer who participate. Those who do well on Levo have no need of our help so they wont be visiting us, they'll be getting on with their lives.

I have been diagnosed/treated for 48 years, since my mid-20s and I started getting symptoms a few months after my second child was born. It did take two years to get a diagnosis and I was on Levo only and doing fairly well - mother with part time job - until a very stressful time started in 1995 with job (now family business), family moving in with us, etc., possibly caused a decline in my health. It was then a struggle to get help from my GP or endo so it was basically a case of sorting myself out. So it is possible to do well on Levo, just don't go looking for negatives.

It's a shame your GP backtracked on the dose. 25mcg really is too low, it will shut off your own production but it wont be enough to replace that and then provide the amount you're not producing that is causing your hypothyroidism. It would have been better to start you on 50mcg. You could always discuss the NICE guidelines with your GP:

cks.nice.org.uk/topics/hypo...

Initiation and titration

The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.

The NICE clinical guideline recommends:

Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.

Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.

The British National Formulary (BNF) recommends:

For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.

For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.

[Gosierunn in reply to SeasideSusie]

Thank you! This is so helpful x

[tattybogle]

Hi Gosierunn. Welcome .

try to remember that the regular posters on here tend to be those who had problems .. by and large, the people who get a lot better relatively quickly without running into any problems , will be out and about getting on with life and wont be posting on here very often .. so even though there does seem to be a majority of 'very troubled journeys' on here .. we are actually in the minority .

so don't see the forum as foretelling what your journey will be .. see it as a road map full of useful info put there by people who had problems along the way ... that you can use proactively to help you avoid the potholes before you fall into them.

So the 25mcg dose .. yes you are right , this could potentially be an issue . it is usually a better idea to start at 50mcg , (because 25mcg is so little , it can make some people feel worse).... but some GP 's are very over cautious and will insist on starting at 25mcg and won't budge on that decision about starting dose .

but ....don't worry .... if this happens to you , the key is to make sure you aren't left languishing on 25mcg for any longer than is necessary ...... so you make sure your follow up blood test happens promptly at 6 weeks and if TSH is then 'in range' and GP says "oh ho ~ you're fixed now so i don't need to increase your dose "( but you still feel naff) ....then you can use these references to ask GP to "increase dose to 50mcg as trial to see if getting TSH lower in range improves how you feel"

references specifically advising GP's to keep TSH lower in range here : healthunlocked.com/thyroidu....

explanation of why 'in range' TSH may not be good enough for some people and the may need it towards the lower end of the range ..the shoe size analogy ; healthunlocked.com/thyroidu...

positive stories .. off the top of my head erm .... eg. Charlie-Farley (click on her name to go to her profile page ~ she's not around much at the moment , busy house hunting so may not answer if you ask anything) but if you read through her first posts, to the later ones , you will read how she improved dramatically once she managed to push the GP to increase the dose appropriately and to keep doing so until she felt better... when she first turned up here she was really really struggling to function, needed help to make a cup of tea , unable to work ..... she had been left on 25mcg for far too long .... but within about a year she was firing on all cylinders again ,and then even started being an admin on here.... it is still taking her a bit longer to get over 'overdoing it ' than it used to . but she is hugely better than she was when she first came .

[Gosierunn in reply to tattybogle]

thank you tattybogle this is really really helpful thank you.

[Charlie-Farley in reply to Gosierunn]

Hi

I am house hunting and sadly not on here much - tattybogle is right - lots of successes. There’s stuff in my bio and posts about getting to full replacement dose - getting genned up and not humouring the doctors.

My later posts are little less critical because further reading has made me realise how little they know is based on what they are taught. 😱

[Bigthensmallthenbig]

I am not learned enough to offer advice but I can say that in finding this group, you are in the right place. It has been very helpful to me in the short time I’ve been here.

welcome

[1tuppence]

Hello Gosierunn. When I eventually got offered a trial of Levothyroxine, after years of battle to get diagnosed and not have my many symptoms ignored, I was started on 25mcg. Unusually I felt immediate benefits. ...most likely because my body was desperate for help. The effects decreased over the six weeks, then improved again on each increased dose after the 6 week wait for blood tests. This pattern continued until I was settled very happily on a dose of 125mcg.