In the last 12 months I have been diagnosed with vitamin D ,iron and b12 deficiency and been dealing with a breathing issue related to gastric problems for the last 4 years. I ended up having an iron infusion and started on b12 injections in March. I was diagnosed with hypothyroidism and been taking levothyroxine since 2013 and was formly diagnosed with Hashimoto's disease in March, thought to be the cause of my deficiencies.
The GP has recently taken my Thyroid bloods and says they are normal. I have read that ideally the TSH should ideally be below 2 (it has been between 3 -5 since 2013) and T3 should be taken.
I am desperate to feel well and want to give myself the best chance to get well.
Has anyone had any luck with seeing an understanding, knowledgeable Endocrinologist in the UK??
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Jacklover
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Gps are often too conservative with treating hypo people with Levo. They are scared to give us too much so instead dont give us enough.
As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.
So obviously you need a dose increase, probably of 25mcgs. Sometimes asking for it on a trial basis works well.
T3 is only ncessary if you are a poor converter of T4 to T3. This happens in about 20% of hypo people, so the majority will do well on Levo alone but you do need to be taking enough of it.
Have you been tested for coeliac disease? This can also be a cause for low vitamin levels.
As you've learnt, hypo people do get low vitamin levels.
How much vit D are you taking? Its best to take it with vit K2 to help it go to your bones.
What was your folate result?
We need OPTIMAL levels of key vitamins for our thyroid hormone to work well.
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.
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.
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.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hi thank you for the lengthy reply and advice. I am taking vit D with k2 4000iu. My level is 96 and folate is >20 and just switched to 5mg once a week - being advised by the Dr who did my iron infusion and started me on b12 injections. The same Dr took bloods for autoimmune diseases which showed pos thyroid antibodies in March - had hypothyroidism since 2013.So all in check - I am having my bloods done privately, as find it too tiresome asking the GP again. I wanted to know my T3 as was not done on last test. So will see what it shows!
Was test done early morning and last dose Levo 24 hours before test
If you took Levo before test Ft4 is falsely high
TSH is far too high for someone on Levo
50mcg is standard STARTER dose Levo
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 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).
Teva brand upsets many people
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).
I have been tested numerous times for coeliac disease and not eaten any gluten prior to test. Had a biopsy from duodenum too - all negative.
you would need to be eating a high gluten rich diet prior to testing otherwise test would always be negative
But if you already know you are gluten intolerant, not much point testing
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)
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
Wow- a lot to take in!! Thank you. I had my bloods taken for tsh - 3.9 and free t4 12.9 when I hadnot taken it for 24 hrs. Made sure I had it done about 10 am. Does this indicate anything??
Thank you for the reply. I have only recently had my repeat iron panel taken. I am due to have done again in December, as instructed by a Dr that I am seeing at an iron and b12 clinic. Just to say that I weigh 57kg and if I am right it works out that I should be taking 100mcg - worked out to the nearest 25mcg.
I am on a gluten free diet due to feeling better on it since 2018 but had to go back to it for quite a few weeks when I had biopsies done for celiac test and for blood tests.
I only eat reduced fat feta, in regards to lactose. I have problems with many foods so have to have this as one of my proteins.
I am due to have my thyroid bloods done privately this week and plan to go to my GP or see an Endocrinologist (particularly as I have so many deficiencies) following getting the results with the hope that my levothyroxine will be increased!!
Thank you again for your information. I have printed out many of the links to enable me to read them at my leisure.
I am on a gluten free diet due to feeling better on it since 2018 but had to go back to it for quite a few weeks when I had biopsies done for celiac test and for blood tests.
Eating gluten in weeks before testing likely to have reduced absorption of vitamin levels
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