I feel like I'm banging my head against a brick wall. It took a long time for the GP to actually prescribe levothyroxine and then at every juncture they've been resistant to titrating my dose upwards despite my TSH being the high end of the "normal range" and me feeling terrible. They also won't test for T4.I'm now under fertility who have said we can't start IVF unless my TSH is under 2.5. They've written to my GP and even then the response was "but your within the normal range". They've finally upped my thyroxine to 100mg after I saw a locum who understood. My next test is due the end of January and despite fertility asking them to titrate my dosage to TSH and T4 they've only put TSH on the blood form and when I raised this said it wasn't needed.
Is there some sort of hack to get them to actually do what they should? Every tiny thing is now taking ages going back and forth between the hospital and GP. It's driving me round the bend!
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Lasagnebread
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You can try and find a GP thats sympathetic then try and always get appointments with them.
Ask for the dose increase on a 'trial' basis which sometimes goes down better.
Sometimes its the lab that refuses to test FT4. Often easier to test privately and if you need GP to accept results then use Monitor my Health which is an NHS lab.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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
If GP remains unhelpful
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
You've had some great advice. My only similarity is that my GP, too, told me I was well (!) as my TSH was right at the top of the range, 4.87. When the little book you can read at any pharmacy 'Understanding Thyroid Disorders' by Anthony Toft, now retired, previously a bigwig at the British Thyroid Association, states that hypothyroid patients once adequately medicated, usually need a TSH of around 1, although some don't feel well unless TSH is suppressed. (My Italics) Needless to say, this was the final straw for him. I haven't moved as it appears NHS GPs where I live are not the cream of the crop. There is a flourishing private GP market, which I am loath to enter. My investigations, including voraciously reading this site and TPAUK, led me to heal myself.
You are at the start of your journey. All thyroid journeys are long and arduous rocky roads. Mine costs me a lot of money. Perhaps you won't need to do this. Ask TUK for their list of thyroid-friendly endocrinologists. Most endos are diabetes specialists and some of them are just as clueless as our GPs. See a TUK-recommended endo, who will write to your GP and correct his buffoonery, suggesting your levo is titrated upwards and blood tests 8 weeks after each titration upwards until you feel well, and f*ck the TSH test. You might also want to consider getting your own tests (follow blood test protocol from the site) before you see your endo, so your 1st appointment isn't wasted. Your GP won't care because he's just following the endo's say so. What a tool! He's about average, tho. Just imagine...
SlowDragon Fertility have prescribed me folate, Vitamin D and have told me to take 400mg coenzyme q10 daily. My calcium levels have been low previously and they told me to have a babybell a day for this (not sure how conventional that one is!)I had a blood test for them this week which I think was a full vit panel so I should hopefully find out in the next couple of weeks where I'm sitting.
On top of what they've prescribed/recommended I'm taking a B vitamin spray and iron tablet at midday.
They won't let us start IVF unless my TSH is under 2 but so far it's sitting statically. I originally had autoimmune thyroiditis and I've noticed my neck seems more swollen and my joints are hurting a lot - not sure if it's possible for this to flare up again now I've gone into full blown hypothyroidism but I feel much worse than my levels suggest.
My GP is strangely quite good with almost everything else but thyroid they are incredibly stubborn! I'm thinking I might ask them to refer me back to endocrinology.
'calcium levels have been low previously and they told me to have a babybell a day for this...'
Well, this exactly sums up how much they know about good nutrition, if they advise you to eat a highly processed cheese with God knows what in it and think this would be helping! If you do eat cheese, I would rather go for a natural cheddar cheese or natural Greek yoghurt without any additives - much better (and tastier too 😉)!
Many GPs sadly are not very knowledgeable about thyroid disease. They have been told that the TSH is all you need to know about thyroid and this is what they hold on to. The TSH range has been established on HEALTHY individuals without thyroid disease, and yes the feedback between TSH, T4 and T3 is in general intact in a healthy person. However, in thyroid disease, this feedback from your pituitary is not always working in the same way as it does in a healthy person (but GPs will not acknowledge this), and this is where the problems start. Therefore it is important to always consult the free T4 and free T3 values in a patient on treatment, along with the TSH to guide the treatment. I have attached an interesting publication regarding this:
If you can, I would do a private thyroid function test, for example Monitor My Health offer a full thyroid test including antibodies (with the code THYROIDUK10 you also get 10% off the test). As the tests are performed in an NHS lab, your GP should accept the results. Once you have established what your T4 and T3 levels are, you will perhaps have a bit more leverage for an increase in medication, especially when T4 and T3 are low in range.
I know it can be hard and frustrating, especially if you feel you cannot get anywhere, but don't give up. And perhaps do think about switching GPs, if you really cannot get anywhere - it might be better in the long term.
A 20g Babybel Original cheese contains 140 milligrams of calcium, which is 10% of the daily value. A 20g Babybel Light cheese contains 150 milligrams of calcium, which is 12% of the daily value.
I mean, for all know, she could be right. Everyone is unique, and there may be some reason why this would suffice. Maybe some people shouldn't increase calcium levels at a rapid pace & a Babybel a day is the way to go at first?? But I'd hate to suffer that rubber torture daily, only to find out after 6 months, it's done nothing!
I'd rather make meals to sprinkle Parmesan on ( higher in calcium) and there are so much nicer/ healthier cheeses. As well as good old milk 🥛
If you took some ordinary BabyBel cheese and removed some of the fat content, the percentages of every other constituent would increase.
If 20 grams of BabyBel cheese contain 140 milligrams of calcium, how many grams of cheese do you need to contain 150 milligrams of calcium?
= 150/140 * 20 = 21.419 grams
Take 21.419 grams of BabyBel cheese and remove 1.419 grams of pure fat.
Resulting in 20 grams of fat-reduced BabyBel containing 150 milligrams of calcium. (There would be proportionate increases in all other constituents. They might adjust some of them a little.)
If you check claimed nutrients, you can see that the fat content drops from 5 to 3 going to the Light version. Given that food nutrient levels don't have to be as accurate as my calculations were, that tends to confirm the theory. (I think measurements to the nearest gram would be accurate enough.)
See what your thyroid and vitamin levels are after next test
Approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
originally had autoimmune thyroiditis and I've noticed my neck seems more swollen and my joints are hurting a lot
So do you have high TPO or high TG antibodies
Are you on gluten free diet
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Isnt chalk a good source of calcium as well, sheesh, why not just eat that? Of all the calcium rich foods they could have advised, they told you to eat one of the most minging, highly processed ones. Ridiculous !
Also to add, as much as is practical I've been trying to not eat before 12. I have my levo as soon as I'm up and try and give 2 hours between that and my other tablets.
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