This started a year ago, I had a full blood panel with symptoms of light period, cold, tired, etc (I assumed iron deficiency) the results showed very low vitamin D and a tsh of 5.8 and tpo 98.
I was given 50,000 unit vit D and thyroid tests to be repeated in 3 months time, the next test results were tsh 3.8, t4 11.1 and tpo 98, the GP requested to repeat bloods again in 3 months.
The next set of results my tsh was again 3.8 and they didn’t test tpo, the doctor suggested trialling levothyroxine but I requested a vitamin D test to know if the symptoms were from the thyroid or vitamin D deficiency, the result of this test came back at 2 above deficiency and I was told that was fine.
I then started 25mcg of levothyroxine and retested after 6 weeks, my tsh has gone down to 2.39, t4 is 12.2 and they didn’t test tpo. I still have symptoms of fatigue, constipation and I cannot lose any weight no matter what, I’ve been gluten free and this hasn’t helped. I requested an increase in the levothyroxine which the doctors refused as they say my levels are now good, and instead offered me a prescription for laxatives. I’ve been told to come back in a year for a thyroid function check up. They told me it indicated an autoimmune condition but I have not been diagnosed with anything.
I’m not sure where to go from here, I’m considering a private thyroid test? As I’m suspicious that my level has gone back up as I’m feeling worse and it’s been over 6 weeks since this last blood test.
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Your results suggest you are still very hypothyroid and you need an increase in your levothyroxine. As a rough guide, most people need approx 1.6mcg levo for each 1 kg of body weight, so you can work out how much you might need. If you can add the 'normal ranges' for your test results, that would be helpful. I assume your tsh is still well within range, so your GP is being overly cautious. I'm afraid you're going to have to do your research and be very firm with your GP. Explain you are still very symptomatic, and need an increase in your levo. The NICE guidance is here nice.org.uk/guidance/ng145/... . Look at the section 1.3 and 1.4. Many of us find it easier to write down all our symptoms and reasons for wanting an increase. Many GPs might want to double check with an endocrinologist before agreeing to an increase. Be firm (but polite ).
Thank you for your reply. I was very firm and had everything written out in my last appointment, the doctor then spoke with a colleague and they decided not to increase. I’m just not sure what to do, I feel so hopeless because I can’t live like this long term and I’m having a lot of problems with depression and anxiety as well, I just don’t feel like I can go back to the gp again with the same problems.
Bloods should be retested 6-8 weeks after each increase
You will need several increases over coming months
As Forestgarden says ….Typically eventually likely to be on approximately 1.6mcg of levothyroxine per kilo of your weight per day
Unless very petite that’s likely to be at least 100mcg daily
We usually start on 50mcg as starting too high can be too much of a shock to your metabolism
Request/politely insist on next 25mcg dose increase to 50mcg
Your high antibodies confirms cause as autoimmune thyroid disease
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
How much vitamin D are you taking
Aiming for vitamin D at least over 80nmol minimum
Autoimmune disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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
Testing options and includes money off codes for private testing
Thanks for replying and for all the info and links I’m 64kg and 5’8 so definitely not petite, the doctor who first prescribed 25mcg said she would see how it went and we could increase, by now that doctor has left the practice and any new doctor I’m given isn’t interested and outright refuses to increase and makes me feel very stupid for suggesting it, so I’m not sure what to do now, maybe switch practices all together? Or pay hundreds for a private endocrinologist?
I’m also unsure why they won’t give me a diagnosis? And I’ve only ever had phone appointments, no doctor has ever checked my neck or anything for a goitre, I do think it looks a bit large but I’m worried about asking them because I have anxiety and feel like I may just be a hypochondriac
Levothyroxine doesn’t “top up” failing thyroid, it replaces it
Guidelines of dose Levo by weight
So 64kg = approximately 100mcg per day
Some people might need a bit less, some might need a bit more
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 near full replacement dose
Aiming for Ft4 (levothyroxine) result to typically be at least 60-70% through range when on adequate dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
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).
Try making a face to face appointment with different GP
Print out some of these guidelines and be prepared to push for next increase
Which brand of levothyroxine are you currently taking
Autoimmune thyroid disease is NOT a rare disease, but sadly although this should be managed by GP many don’t seem aware of clear guidelines
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
It seems the biggest problem for us patients with hypothyroidism when trying to get the correct Levo dose prescribed from our GPs is the blood testing TSH range being so high, when 2 should be the maximum.
If our GPs saw that 2 was the maximum in the range we wouldn’t have the problems that the majority of us patients encounter.
So does anyone know why the range for TSH in blood testing is set so high, or help me to understand why it is, (when the population with a healthy functioning thyroid have serum levels of around 1), and if there are any investigations ongoing into this to bring it down to 2 in the uk? It would be nice to think there is hope for the future.
It’s so hard to argue with a GP that says “but you’re within the range “.
You're not hypochondriac. Don't let them gaslight you. You need a levo increase! Ask to see another GP. Have you got someone who could go with you to the appointment? A partner, or parent? I hate to say this, but somebody male? I'm afraid many of us on this forum have gone through what you're experiencing. Insist on an inperson appointment. And if they won't listen, ask for a referral to endocrinology. They're obviously clueless about thyroid problems and the NICE guidelines which they should be following... perhaps you can quote the relevant parts to them. You should not be at the stage yet when you need to go private.
Thank you for making me feel like I’m not going crazy! The sad thing is all the doctors I’m getting appointments with have been female! I think I will go through the whole gp process again and try for an in person appointment, I’m just such a whimp when it comes to people of authority, I just know I’ll end up in tears for no reason, but I suppose I’ll have to do it.
I’m getting appointments with have been female. Unfortunately I've had the same experience, but it really is just pot luck m/f and most (3/4?) are clueless. Even at the endo consultant level quite often they're diabetes specialists, not thyroid. Its tough going. You're on a steep learning curve. You will become a thyroid expert quite quickly, and you will have to be firm and keep pushing for what you need, even if it makes you feel 'unpopular' with your practise. At least you've found this forum 🙂
When my GP refused to increase my Levo (after reducing it) and hypo symptoms returned big time, after response from admins here, I used 'that Thyroid UK recommended an increase after blood tests' to GP and I got an increase. Don't let them bully you+keep you unwell because they're ignorant when it comes to thyroid issues, just use Thyroid UKs input. Worked for me. Trust it works for you.
Get B12, folate and ferritin levels tested……via GP or privately
Get coeliac blood test
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
I had a coeliac test originally and it came back negative and not coeliac, but when I eat gluten free I do feel better, I’ve suffered for years with stomach ulcer pains and acid reflux, which I assumed was too much stomach acid but I’ve just looked it up and it seems they are symptoms of low stomach acid. The doctor said there is no reasons for me to be gluten free but I’ve been trying it anyway.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
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.
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
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
So many brilliant replies here! Mine would be to push for referral to endo as they will/should know the guidances for Levo treatment. Your GPS clearly don’t have a clue! Good luck and stick with it - hope you feel better soon!
From reading posts old and new I dont think many Endos are any more well informed either, just more arrogant and better paid. Most being diabetes specialists, not thyroid. It really seems like potluck if you get a good one.
Just a suggestion: I have been on Levo 75 mcg for 18 months (I have autoimmune hypothyroidism) but was still cold and unable to lose weight then recently, following a Covid infection in December and another very debilitating viral illness with a rash in February, aching muscles and joints so I wanted to try an increase of 25 mcg. NHS recent test results showed TSH of 1.07 (range 0.30-4.80) and T4 11.3 (range 7.7-20.6) and knew GP would say all is normal when I certainly don’t feel it. It so happened though that at same blood draw my cholesterol was checked and that had jumped from 5 a year ago to 6.1. I therefore used that abnormal result as a lever to get my Levothyroxine increased and my GP actually agreed so am now on 100 mcgs daily! Just might be worthwhile asking for a cholesterol test and if raised you could use that as a reason for optimal treatment.
Thanks for replying! I’ve ordered a private thyroid test for function and antibodies as it’s been over a month since the nhs test which I had a couple of ours after I took my levothyroxine, so I’m not sure it would have been completely accurate? I’ve also got a blood test coming up as part of a medical research study which will include cholesterol so I’ll be able to find out the results for that as well, depending on my thyroid results I think I’ll go back to the gp and ask for a raise in dose and if they are going to refuse I’ll ask for an endo referral. Can I ask if your gp diagnosed you with autoimmune thyroiditis? My gp has verbally told me on several occasions that’s what I have but have never given me a formal diagnosis.
Have your antibodies been checked, autoimmune Hypothyroid is the most common cause, overwhelmingly so, but its not the only one. If they haven't been then your GP is merely speculating.
Ok fair enough, its just I was told when I was diagnosed as hypo that its almost always autoimmune, but I've never had raised antibodies so it seems as though mine is caused by something else 😊
I really feel for you over all this HoneyBee2 and yes my GP did tell me I had autoimmune thyroiditis because of raised TPO antibodies which she had tested for. It is likely, as I understand from all the experts here, that taking your Levo only a few hours before test could have skewed your result. I arrange to have my blood tests about 9 am after fasting overnight and last dose of Levothyroxine 24 hours beforehand then take next dose just after the blood test. I wish you well and hopefully your private test will give you the best indication which is what your T3 level is as this is what really matters - mine is still at the lower end of normal range but hopefully will pick up now I am getting more Levo.
I feel for you, I started on 25mcg and many different drs refused to increase for 3 years 🤬. I eventually took my hubby with me and asked for an increase and they agreed - very easily I might add on this occasion. Whether it was the dr or because hubby was there I don’t know. You definitely need to get that Vit D up though, it makes a big difference in how you feel
I glanced through most of your replies... So much great info. I did see that you were tested for celiac, but was that done BEFORE you went gluten free? I know that, in order for the test to be accurate, you have to be taking large amounts of gluten for a period of time and, from what I've heard, is absolutely miserable to do. Hopefully, you tested before. If not, I'm not sure I would go through the pain of going back to gluten, just to test. But, of course, that would be up to you. Also, recent studies have shown that vitamin D has a direct result on your ability to convert T4 to T3, the active hormone that affects virtually every system in your body. I would suggest you add vitamin K2 to your D3, or get a D3 supplement with K2 already added. K2 helps to direct calcium to your bones and teeth, and, potentially, away from your arteries, helping to prevent calcification. Deficiencies in B12, folate, iron/ferritin, magnesium and zinc can have similar symptoms and can affect your thyroid levels and/or conversion. Hope you get relief soon!!
Thanks for replying! I did have that test before I was gluten free and when I was eating a lot of gluten thankfully, I’m going to look at my vitamins and what’s in them/what I could add! I have theorised that the vitamin d might have played a large role in the onset of this autoimmune disease, as when my vitamin D levels were very low I had the highest tsh I’ve ever had, which naturally went down to about 3.8 after I was treated for the vitamin D deficiency! I think gp’s really need to be taking vitamins more seriously, I don’t think them telling me that one or two above minimum levels is fine is okay! But you can’t tell a gp anything haha
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