I’m new to the thyroid community on Health Unlocked and have a question. I was diagnosed with under active thyroid about two years ago and was put on 25 micrograms of Levothyroxine. My last test result was TSH 7.4 and T4 was 14. My gp won’t test T3 as he says it’s the T4 that’s important and mine is apparently ( his words ) perfect. I’m posting on here because I’m not feeling 100%! I’m fit and well but just feel below par at about 90% I’d say and wondered if anyone had any thoughts on my blood test readings and if they might be reason for why I’m feeling slightly below par?
Kind Regards
Bladerun
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Bladerun
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You haven't quoted the reference range for your FT4 test but it looks on the low side.
Also, a TSH of 7.4 is likely to be above range and you're hypothyroid yet on treatment of only 25mcgs.
25mcgs is a low starter dose. The idea is to retest after 6-8 weeks, assess results and increase until TSH is at or below 1 and symptoms have resolved.
Many GPs are content if our level is just within the reference range and need pushing to raise the dose of Levo.
Can you see a different GP at the same practice? Perhaps take someone along with you for back up. Have a read around this group and pick up tips as to what to say to the GP. You will need to be assertive in a nice way. If one GP refuses then go back and try a different GP. Don't give up!
Have you had your key vitamin levels checked?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you so much for your reply and the useful information you give. I had an antibody test about two years ago before starting the medication and it was positive. I always take the LEVO at the same time each morning and wait an hour or more before first cup of tea. As for vitamin blood tests I’ve not had any done and was unaware of the facts surrounding vitamin absorption and gluten etc etc! My GP hasn’t had any conversations with me about my thyroid at all other than to say he will check my levels every 6 months as opposed to yearly as he wants to make sure my T4 remains stable! I don’t know what T4 range is supposed to be but TSH is apparently supposed to be no higher than 5 ( whatever 5 is or means )! Yes I guess I can ask to see another GP in my practice but the guy I see is head of the practice and is referred to by other GPS in the practice as ‘ the professor ‘! He’s very well respected and his wife apparently has thyroid issues which leads me to think ,well he knows his stuff which is why I think I need to understand what this T4 level of 14 actually is! I’ll follow up your advice regarding vitamin levels and dairy products etc.
Thanks Jaydee all very interesting and especially when considering the vitamin absorption aspect! I’ve suspected for a few months that my thyroid could have been managed better! Also you mentioned LEVO brand! Well they’ve changed the brand as well which I’ll need to follow up!! It’s something I’ve asked both the pharmacist and the GP last year about but they insist that the brands they use all have the same active ingredient! I don’t know how significant it is but one brand is twice the size of the one I’m currently taking! Dear me it’s a minefield!
Which brand of levothyroxine are you currently taking
Only 3 brands available in 25mcg
Teva (also boxed as Hillcross)
Mercury Pharma (also boxed as Eltroxin)
Wockhardt
It’s something I’ve asked both the pharmacist and the GP last year about but they insist that the brands they use all have the same active ingredient!
Many people find Levothyroxine brands are not interchangeable.
They use different fillers. Less than 1% of tablet is active ingredient
Also different brands are not bio equivalent. Same dose in different brands will give different results
Brands
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)
Aristo (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).
T4 levels are better being stable towards the top of the range, not bottom.
Your TSH needs to come down. A Lot!
If you can get the NHS app, then permission to see your results on it from GP reception thats helpful.
Go see a different doctor and not this dinosaur. You might stand a chance of getting well then. You will need to be guiding and pushing them for repeat blood tests and dose increases but you can be well.
ALWAYS test 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. Unless over 65 standard STARTER dose levothyroxine is 50mcg
Guidelines of dose Levo by weight
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 near full replacement 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).
See different GP
Request 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each increase in dose
Meanwhile request vitamin D, folate, ferritin and B12 levels are tested as these are frequently low as direct result of being hypothyroid. This is because we develop low stomach acid, when hypothyroid and this leads to poor nutrient absorption
Also because your hypothyroidism is autoimmune (confirmed by high thyroid antibodies to get coeliac blood test done BEFORE trialing strictly gluten free diet……as per NICE Guidelines
Thank you for reply. I’m 68 and weigh 12st/76kg. My test was done at 9-30 am and was done approx 3 hours after my Levothyroxine which I usually take at 6-30 am.
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