After my latest blood tests, I received a txt! Message from my GP saying he will reduce my Levo from 100 Mcg to 75 Mcg. I was startled to receive a text message and no phone call, so I called the surgery to query this, as the text message also said I could speak to the surgery pharmacist if I had any questions. The surgery scheduled the pharmacist to call. He did call and was perturbed at my questioning what the doctor had said. He could not wait to get me off the phone and said he would have a GP call me. It’s more than 3 weeks later and no GP has called, Some odd things are that I’ve asked my GP twice in the last 9 months to be referred to a specific endo who was recommended and he waffled and waffled and said he would get back to me but did not.
I’ve never seen an endo since taking levothyroxine and really think I should be able to. Also, the GP said the Levo amount would be reduced in my next prescription renewal, so he didn’t deem it urgent. I have lost faith and trust in this GP for various reasons. I attach my results.
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VintageMustard
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Presumably you have no symptoms of overmedication? Are you well on your current dose of Levo?
Your GP is clearly adjusting your dose purely by TSH result alone which is wrong. Your FT4 result is only 61% through range. There is no FT3 result and that is the test that tells us if we are overmedicated.
There has been no discussion between you and your GP about reducing your dose. I would make an appointment with your GP and challenge the dose reduction, using the following information to support your opposing a reduction. Your GP is supposed to be your partner in your medical care, not there to dictate to you and ignore your concerns.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Personally, unless you have a specific reason for wanting to see an endo, I wouldn't push for it. Most are diabetes specialists and know very little about the thyroid. They may also be guided by TSH only and insist on a dose reduction. Many members have been very disappointed by their endo experiences, the one I saw insisted he brought my TSH back into range (it was suppressed at the time) and in doing so my FT4 lowered to near the bottom of the range and my FT3 was at the lowest limit of the range, he made me extremely ill but he didn't care, all he wanted was my TSH to be in range. It took me years and years to recover from his ignorance and incompetence
and it was without the help of the medical profession!
Thanks for both replies. I had asked for antibodies test several times in the past two years, but they didn’t happen. I did find out r cent,y, however, from a locum GP who searched back in my records to when I first went on Levothyroxine that antibodies test had been done then. I will ask for the results of this. That GP said that those results could predict what could happen in the future. I did not know that there were two different tests for antibodies as mentioned by Slow Dragon.
I regularly have my D3 levels tested. I got them up to about 210 nmol and the rheumatologist I see for osteoporosis said that was too high! And he told me to stop taking my supplements. However a new pain clinic I saw said my D3 results were fine.
What is considered low for Vit 12 as the range is so vast. I was about 500 last time and GP it was fine. I wanted to get a B12 shot and he said no. Those shots helped a friend with fibromyalgia a lot.
When I’ve had blood tests, I always go in the afternoon so I will try the early morning slot one next. I try to avoid the vast amounts of people in the queue at early morning.
Re how I’m feeling, my pain levels, muscular etc have been low over the past two or three months as long as I am at home. I think a lot may be down to it not being winter. I still have a lot of fibro fog though
Alwlays ask for a print out of any test you have done so that you can monitor your condition and understand it.
That GP said that those results could predict what could happen in the future.
Raised antibodies with normal thyroid test results indicate that the Hashi's (autoimmune thyroid disease) will gradually destroy your thyroid and lead eventually to full blown hypothyroidism.
I regularly have my D3 levels tested. I got them up to about 210 nmol and the rheumatologist I see for osteoporosis said that was too high! And he told me to stop taking my supplements.
210nmol/L is high compared to the level recommended by the Vit D Council/Vit D Society which is 100-150nmol/L. However, if supplementing and it goes over the recommended level, you don't stop, you adjust the dose to maintain the level recommended, retesting twice a year to check this.
However a new pain clinic I saw said my D3 results were fine.
That just means somewhere in range, so it's important to know exactly where in range, hence asking for a print out of results. >50 is classed as adequate which a doctor would class as fine, but that is actually low when compared to the level recommended by the Vit D Council/Vit D Society.
When taking D3 it's important to take it's important cofactors too. Doctors don't know this, they're not taught nutrition.
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
What is considered low for Vit 12 as the range is so vast. I was about 500 last time and GP it was fine.
Is the unit of measurement pmol/L or ng/L or pg/ml (ng/L and pg/ml are the same).
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
However, serum B12 test shows the total amount of B12 - bound and unbound (free/active). An Active B12 test shows what is available to be taken up by the cells so is a more useful test but not normally done on the NHS. It can, however, be done with a fingerprick test with Medichecks if you want to check yours
Similar to overactive symptoms, anxiety, palpitations (although they are also symptoms of hypOthyroidism), shaking/trembling (hold arms out in front of you unsupported, see if there's any trembling). No way are you overmedicated with FT4 only 61% through range, you wont be making enough FT3 from T4:T3 conversion to be overmedicated.
I do take the co factors with the D3. I do want to have another D3 test as I stopped the D3 for a while and now only take 2000 Iui daily and have been doing so for a few months now.
SeasideSusie hit the nail on the head. It looks as if he is dosing on TSH alone. Personally, if you feel well, stay on your 100 mcgs and just don't tell him. If he notices that you are using up your script faster than expected (which I doubt he will) just tell him you tried his suggestion but 75 mcgs made you feel very ill (because it will). So you reverted back to 100 mcg and now you are well again.
BTW I do understand it is very upsetting to tell your doc (indirectly) that he doesn't know what he is talking about but you must, to be well. If it is super upsetting then just change you doctor. Many of us here have got through many docs, I am on my eighth. I got to the point when I spent only 5 minutes with my penultimate doc before I realized she was an idiot. Gosh that's a harsh thing to say but when you are fighting for your health and maybe life, reality matters.
That's a good idea. I guess it would be possible to do as I would be given 50 mcg and then 25 mcg tablets. This is a GP who took me off low dose naltrexone, which I was taking for my fibromyalgia and with the agreement of my now deceased fibromyalgia consultant, because he said there was no evidence that it worked, Yet, when he referred me to two separate pain clinics in the last year (at my behest) he asked if they could prescribe the LDN for me. He could prescribe it for me, but it's obvious he doesn't want the cost (£40 a month) to come out of his budget.
This may be a wild thing to say and please don't over think it: I think that if you could get your thyroid meds working correctly with plenty of T3 swimming around in your system you might find that many of your fibromyalgia symptoms disappear. Just a feeling,
Thank you. I will email for the full article, the endo I wanted to see has a specific interest in mental health and how it relates to physical health. I think it was in here that I found out about them. They practice at Kingston Hospitsl. I hope I'm allowed to mention that here, as long as I don't mention their name.
Looking at previous posts, you have fibromyalgia....this is often linked to low FT3
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Have you ever had both TPO and TG thyroid antibodies tested?
Or vitamins?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Personally I would either insist GP runs further tests BEFORE reducing dose
Or test yourself privately BEFORE agreeing to dose reduction
Guidelines on Levothyroxine dose by NICE is approx 1.6mcg per kilo of your weight. But it is only a guide, some need more, some less
Sounds like, you maybe have high thyroid antibodies ....perhaps can you get online access to your medical record and blood test results?
If not ask GP to look through old test results
You need folate and ferritin tested if not been done
Important to get thyroid blood tests as early as possible in morning and fasting (before taking Levothyroxine) as this gives highest TSH and lowest FT4.
I got a copy of antibodies test which was done in 2010. I was told about this back in June by a locum GP who ordered the blood test above which led to the lead GP ordering my reduction to 75mcg. I had a conversation with a very pleasant newly hired GP at this surgery who had been charged with calling me to explain why my dose had been reduced. He offered to refer me to an endo as he said they had no choice to follow the lab results. I want to attach antibodies results but I cannot see how to attach,😩
Wow - that just seems like very poor practice to me. I thought the NICE guidelines recommended that the patient/doctor relationship be a collaborative one? I'm sure there's something in there about that. Even if it was good advice to reduce it, it is poor not to discuss it first and very, very poor not to follow up on it. That's reportable I would day. I hope you get something sorted out soon.
I have had many many problems with this surgery in the past. Not just to do with thyroid problems. I’m in the process of doing my third formal complaint about them. If I could find a better, different surgery, I would. It’s exhausting.
Oh no that's so upsetting - the more so because it's about your health. I've just changed for the same reason - luckily there was another one nearby and they are better in that they put results online (and promptly).
Various surgeries here have shrunk their catchment area. This is what happened to the one I wanted to switch to. The majority of GPs there are female and they’ve been there for years. The one I’m with has frequent turnovers of staff, but it was a female locum I last saw who delved into my past blood tests and told me I had had a test for antibodies many years ago. This was after she did a blood test form and I asked her to include antibodies test. The GP I am having problems with is the clinical lead.
Please insist that your are NOT over-medicated as there is no FT3 result to show this. The Levo you are taking is T4 - an inactive hormone doing very little in the body - and has to convert into the ACTIVE hormone T3 - needed in every one of the trillions and trillions of cells in your body. So when the FT3 level is low there is not enough hormone to service all the cells - the brain cells have first call - then the gut/immune system - heart and so on. Rather like buttering a loaf of bread with only a teaspoon of butter ... You will have to stand your ground as reducing your dose could possibly make you more poorly ....
You can insist - but it is rarely done in the NHS - and it does beg the question why. Reading the posts here from way over 100,000 members you will see this is one of the most difficult issues in the NHS. The price of T3 has gone through the roof giving the NHS a good reason to stop the prescribing of T3. You have to jump through hoops to obtain T3. Because it is very rarely prescribed they think it reason enough not to test. Sadly it is also because the workings of the thyroid are very poorly understood by both GP's and Endo's. You will learn far more here than in any GP surgery - sadly.
If you are in a position to have Private Testing through Thyroid UK - then it would be so worth it. I live in Crete so testing the things I need is easier.
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Docs want to reduce my T4 Levothyroxine. Are they right to do so?
