Hi...over the last 6 months I've had to take 100mcg of levothyroxine as the metevive wasn't working and had a TSH of 49.2...6 weeks later it had come down to 5.5...
3 months on from that my results are..as shown...
TSH has gone high again..but why isn't the doctor in a rush to speak to me about it?apparently booked a call for 2 weeks time with me....any advice appreciated
Ring/contact GP for immediate 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks later
Also request vitamin D, folate and B12 testing
How much do you weigh in kilo approx
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Guidelines are just that ....guidelines.
Some people need more…. some less
healthunlocked.com/thyroidu...
Are you lactose intolerant or on gluten intolerant
Amazingly 111kg I've gained 3 stone over 18 months 😭
111kg x 1.6= 177
So guidelines are 177mcg levothyroxine as likely daily dose required
You can only increase levothyroxine in 25mcg steps
Retest 6-8 weeks after each dose increase
Which brand of levothyroxine are you currently taking
What vitamin supplements are you currently taking
Are you on absolutely strictly gluten free diet or dairy free diet
It's branded as Teva..usually something different each time actually...no other vitamins just liquid iron that I bought myself ...no strict diet either..I calorie count which only works for 3 weeks then I plateau...
So you need to get vitamin D, folate and B12 tested
Come back with new post once you get vitamin results
Ferritin is currently too low
Are you vegetarian or vegan?
Aiming to improve ferritin to at least around 70
Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Have you had coeliac blood test done, if not get tested BEFORE considering trial on strictly gluten free diet
lloydspharmacy.com/products...
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
hypothyroidmom.com/how-to-l...
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Was positive for antibodies years ago ...but never mentioned Hashimoto's.. had celiac test and was negative...
Positive antibodies confirms autoimmune thyroid disease (also called Hashimoto’s)
Technically it’s Hashimoto’s with goitre
Ord’s thyroiditis is where thyroid shrinks and shrivels up
Both are autoimmune
As you already have negative coeliac blood test results you can consider trialing strictly gluten free diet
But only make one change at a time
Most important to get 25mcg dose increase in levothyroxine first
Getting vitamins tested ASAP
Likely to need to supplement to improve to optimal levels
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Low ferritin
Look at increasing iron rich foods in diet
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
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
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Great advice thanks so much...yes my teva is 100mcg I'm so confused why it's jumped from 49.2...to 5.5...then to 31.9...could this be the autoimmune side?
As dose is increased….initially TSH drops …..as your metabolism improves…. If still under medicated…..over several weeks/months TSH rises as ready for next dose increase in levothyroxine
Dose is increased by 25mcg …..pattern repeats until on high enough dose
Essential to regularly retest vitamin levels and maintain all four at optimal levels
Strictly gluten free diet/lactose free can help reduce symptoms and improve gut function
Just to say that a number of people have found that the new formula of Metavive doesn't agree with them. There have been several posts on here. The ribonucleotides were added without warning.
I had problems with new Metavive last summer and then tried Tru-Thyroid. Tested after new Metavive followed by Tru-Thyroid, my TSH had gone up to 29.5 (0.27 - 4.20). My weight went up nearly a stone also. Since then I changed over to Erfa and am now on Armour and my TSH has gone down to 0.39. My weight has stabilised, but not gone down much unfortunately.
I think you may find that all calls from doctors are booked 2 weeks ahead - they certainly are in my GP's practice. The doctor probably won't have been asked if he wants to see you any sooner.
I hate all the worry about medication...for many years I was happy on thyroid s...then it was hard to source and trebled in price...I'm only taking levothyroxine because I couldn't source any other worth risking...thyrovanz was OK but always out of stock ...and I'm just at a loss..
I agree with you. I was doing fine on the old metavive. Adjusted it as I felt that I needed it. Bit after all these problems I took the plunge and booked up with a doctor from the ThyroidUK list and now on Armour, but it all adds up - doc's cost + prescription cost etc. I just hope that some of the previous products will come back again soon.
I have a similar situation to you with v high TSH was doing ok on NDT but all the changes made it hard so I thought I have to try Levo. I don’t know yet if it will have brought sone my TSH but I was surprised the doctor did not show much concern from my results and also said if wasn’t her place to comment on results sourced by me rather than through the surgery. I can’t stand the way some GP’s tell you off before you’ve even had a chance to explain.
I’d probably increase by 50 as you’re quite heavy and quite under medicated. I don’t find it that hard to increase Levo - just maybe try 25 extra for a week then go to 50 if you’re concerned. How on earth fo you feel? I’m surprised you’re still standing with those numbers. It doesn’t sound like your doc is up to much if they’re not going to see you for two weeks. I always increase my dose unilaterally then go for the next tests on a higher dose tell them well I was feeling so awful I had to try this dose to feel better and they’re then looking at the blood results of the higher level meds - and it’s a done deal. If I hadn’t done that repeatedly and had waited for my docs to suggest higher doses I would be nowhere! Still it’s taken me over 3 years to feel well.
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