Hi my TSH currently 3.8 (started at 3.8 when first started meds)
T4 16.9
I went on levothyroxine 25mg 8 week ago.
Felt a slight improvement with some symptoms e.g fatigue was no where near as bad.
But now I'm starting to feel the symptoms worsen
Recent blood test TSH 3.8 (8 week after levo)
Others are in range. My endo in unsure if he should increase my dose as he thinks my symptoms may be related to something else. It's very frustrating as everytime I speak with him he quotes "you're in range"
So I end up trying to challenge him with my logic on why I will be getting symptoms and that I'm not at optimum level but he doesn't seem to think I would get symptoms with TSH 3.8.
So either It's something else or he he's brainwashed by the NHS that want endos to stick within strict guide lines.
My symptoms are:
Weight gain
Body temp low 35.5 ish
Fatigue (not as severe since starting levo)
Body almost feels depressed slightly
Gastric issues, discharge at times from back passage
Get woozy drunk feeling at times (gonna have ecg just to check)
Blood preassure normal.
I just feel so frustrated as I was fit and had no problems before, suddenly all gone down hill and I still look after my self, eat well, exercise and live a healthy lifestyle. But feel like im gonna get nowhere with this endo as in his eyes I'm In range. Tried to reson with him that thyroid is progressive and symptoms won't just start when I reach the NHS guidelines which is .02 more than tsh 3.8 lol.
Any advise? Endo said he will do face to face app to discuss my symptoms.
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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
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
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
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)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
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)
is this how you did your test
How old are you
Standard STARTER dose Levo is 50mcg unless over 60 years old
Levothyroxine doesn’t “top up” failing thyroid, it replaces it, so most people will eventually end up on or near to full replacement dose
Sounds like your endocrinologist is diabetic specialist, rather than thyroid?
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)
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).
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 is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 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.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
- The TSH itself doesn't cause symptoms. It's T3 that causes symptoms when it is too high or too low. The TSH is just a rough guide to thyroid status, but it doesn't tell you very much. You couuld have a TSH of 2 but have high FT4 and low FT3, and therefore symptoms.
- TSH is a pituitary hormone, not a thyroid hormone. And the pituitary cannot distinguish between T4 and T3. So, if FT4 is high, and FT3 is low, your TSH will be low but you will have symptoms.
- And the problem with the pituitary is that it too can become sluggish, just like the thyroid, and not doing it's job of producing TSH.
And, if none of that helps, and he starts going on about symptoms being due to the infamous 'something else', ask him this:
Which is the most likely scenario: a) you have 36 diseases with one symptom each, or b) you have one disease with 36 symptoms.
In any case, a TSH of 3.8 is far too high, even though it's within the unrealistic range - especially for someone on thyroid hormone replacement. A euthyroid TSH - i.e. the TSH of someone with no thyorid abnormalities - is around 1. But hypos usually need it lower because they need their thyroid hormone levels higher than euthyroid. Therefore their TSH will be lower. A TSH of over 3 is still hypo.
You haven't given a range for the FT4 but it looks like it could be low. Please always give ranges because they vary from lab to lab and results are meaningless without then. Except for the TSH, because whatever range they give it, it's not going to be realistic as a TSH is always a TSH and euthyroid is around 1.
But, I agree with you, you're probably not going to get anywhere with this endo because he hasn't a clue what he's doing. He doesn't seem to be aware that a normal starting dose is 50 mcg and starting someone on too low a dose is going to make things worse rather than better. And he should not have left you on such a low dose for so long. He should have retested after 6 weeks and increased by 25 mcg. I expect he's a diabetes specialist, isn't he? Most of them are and they know nothing about thyroid.
As to your symptoms, have you had your nutrients tested? They could be low because hypos usually have low stomach acid - although doctors refuse to believe that - which makes digesting food and absorbing nutrients difficult. And it could be low stomach acid that is causing your gastric problems. Some of your fatigue could be due to low iron/ferritin, and the woozy feeling down to low B12. And you need optimal nutrient levels for your body to be able to use the hormone you're giving it.
So, ask to have vit D, vit B12, folate and ferritin tested. Then post results and ranges on here - because doctors know nothing about nutrients, either - and we'll advise you what's what.
Also, be careful with exercise. With a TSH that high you shouldn't be doing more than gentle walking or swimming, or you could make yourself more hypo.
A) most contain iodine not recommended for anyone with Hashimoto’s as can exacerbate symptoms
B) contains iron, which shouldn’t take unless tested and low
What’s your ferritin level
If iron is over range stop supplementing anything with iron in
Have you had vitamin D, folate and B12 levels tested?
Many Hashimoto’s patients find they need to supplement vitamin D and vitamin B complex, taken in morning after breakfast
Plus separate magnesium best taken in afternoon or bedtime at least 4 hours away from levothyroxine
If B12 is low may initially need separate B12 as well as B complex
Taking Levo
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
Well, I'm not surprised the GP says there's not a problem because your FT4/3 are euthyroid. Your TSH is high but not high enough for an NHS doctor to diagnose hypo, even though your have high antibodies. They like it to go at least over-range because they are firm believes that ranges are cast-iron barriers that you should not go over. I'm afraid that you are facing the same problem that so many of us face: medical ignorance.
Thanks. I did have a private test which showed my tsh 4.88 which was over. Intact the GP seemed more OK with me going on thyroxine but endo doesn't seem keen to increase it.
No, because he doesn't understand how it works. He doesn't realise that taking too small a dose causes more problems than it resolves. And I don't know what you can do about that unless you can get him to discharge you into the care of your GP, who sounds more understanding.
Just noticed this:
I take multivitamins with Iron
As SlowDragon says, we do not recommend multi-vits on here for many, many reasons. But if it contains iron, it's going to block the absorption of most of the other nutrients. And, if it also contains calcium, it will bind to the iron and you won't absorb either of those. So, in effect, you might just as well be throwing your money down the drain for all the good it will be doing you.
Thank you. Appreciate your input. Is there any evidance anywhere that I can use as ammunition that states an insufficient dose can cause more problems? Thanks
your high thyroid antibodies confirms autoimmune thyroid disease
Standard starter dose is 50mcg
Current endocrinologist most likely diabetic specialist
Suggest you see a thyroid specialist endocrinologist
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
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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
Thanks for all the info. I reduced gluten straight away to only consuming it if eating out. Should i start eating gluten again and then get tested for celiac?
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