Brief history : diagnosed with hypothyroidism in March after going to the DRs initially thinking my HRT needed tweaking, awful brain fog, hair loss, brittle peeling ridged nails, cold feet but extreme sweating at times incl night sweats, dry flaky skin, horrible joint pain especially my knees.
Initially prescribed 50 mcg Levo and started feeling better, then 2 months ago symptoms came back with a vengeance. Literally feel like I am in my 80,s not 50. The fatigue is horrendous, I cannot get enough sleep, brain fog is affecting my self esteem particularly at work as feel totally useless. I find having to concentrate so hard all day is exhausting and my joints hurt so much. I do have early onset osteoarthritis but this is vile. Popping co codamol and rubbing voltarol into my knees and back. My skin is constantly dry and my fingers feel swollen. My lips are dry and cracked too, hoarse voice, sound like I have a cold coming. And my mood is really low, very tearful (also grieving after losing my Dad in March and my Mother in Law just 6 months before.
Had bloods re done incl antibodies around a month ago, within a few days got a text from my Drs to call to discuss. Dr was really sympathetic,saying “no wonder you feel so I’ll, your antibodies are through the roof (976.6) my serum TSH had gone back up to 4.24, having reduced to 1.57 in May, test in March had been 8.14, and my serum free T4 was 10.8
So said he wanted to double my dose immediately and to go back for more bloods after Christmas. Should I be feeling better by now? It’s been around 3 weeks of the new dosage, which I take first thing in the morning to avoid interactions with food/drinks/ other meds
Is it worth asking to be referred to an endocrinologist if I still feel so unwell when I go back for repeated bloods? Literally every day feels like I am trudging through treacle, feel like an absolute failure as even the smallest task’s feels like climbing a mountain!!
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Vorney
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I read your previous post, you've been though much stress over the last few years with family bereavements, your own health issues and getting COVID six times so it's not surprising you feel so worn out!
The replies on your initial post are still very relevant to now. As others have said you need to get up-to-date blood tests if you haven't already done so and post them here for others to comment.
I did notice that your ferritin levels were very close to bottom of the range and also your vitamin D was low too. From personal experience I know how unwell that can make you feel; have you started supplementing with vitamin D yet?
Having low levels can cause much joint and muscle aches and pains. I'll tag SlowDragon one of the admins and hopefully later they will comment so if you have any add any recent blood tests and there ranges.
The good thing is you've come to this forum and members have much personal and lived experience of all things thyroid so you will get good guidance on how to feel better and be able to live with the condition.
Thankyou, I will contact my Dr and request a blood test to check my vitamin levels, as only checked my TSH, T4 and antibodies last time, hence the change in dose
Thank you for your reply, I am determined to do everything possible to feel well again, but it’s quite overwhelming all the info, is that just me..
So Dr explained they would normally increase by 25, but due to how unwell I have been feeling decided to double. The brand both times of Levo is Teva he also confirmed Hashimoto’s.
I currently also take a bovine collagen supplement and mct powder from Davinia Taylor’s will powders. I take biotin Daily and a multivitamin.
When I had my blood test I took the advice from here and had it before 9am, and stopped biotin for 48 hrs and left 24 hours before I took my Levo
I am seriously considering gluten free, so I will request my vitamin levels to be re checked and go from there
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
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).
SlowDragon has given you a lot of very relevant information; it is not unusual to feel overwhelmed particularly when your diagnosis is quite recent. You're not alone in feeling like that!
I suggest taking each reply in turn and working through each of the links slowly when you feel able.
Ideally GP would have increased dose Levo to 75mcg after May results
It can to difficult to tolerate increase of 50mcg
Which brand of Levo were you taking on 50mcg
Which brand is 100mcg?
Many people find different brands are not interchangeable
It takes at least 6-8 weeks for any dose increase to start to settle
And in reality 12-20 weeks more realistic
But retest after 8 weeks
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)
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you can probably be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until B12 over 500
Post discussing how biotin can affect test results
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac 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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Test results feel rubbish!
So fed up with this hypothyroidism
Feeling fed up of not feeling well and being told it's depression.
Fed up of not feeling myself
FED UP FEELING TIRED.
