I have been newly diagnosed with under active thyroid, I take 50mcg levo but I still don’t feel any better.
It comes after years of having low mood and heavy periods that my thyroid problem was found. I was found to have high thyroid antibodies and 4 months later the underactivity.
Symptoms -
Dry/flaky skin on hands, fatigue, breathlessness, hair loss, hoarse throats in the morning, periods coming earlier and earlier (a problem for me since I’m trying to conceive though probably this is out of the question), heavy feeling in and behind my eyes, cold sweats and cold hands/feet
Any advice greatly appreciated!
Jul results (due to symptoms)
THYROID PEROXIDASE ANTIBODIES 141 IU/ML (<34)
TSH 0.67 MIU/L (0.2 - 4.2)
Nov results (diagnosis)
TSH 20.8 MIU/L (0.2 - 4.2)
FREE T4 10.7 PMOL/L (12.0 - 22.0)
TOTAL 25 OH VITAMIN D 68 NMOL/L
(I can’t remember the range)
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J_Elizabeth_
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High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
TSH 0.67 MIU/L (0.2 - 4.2)
Is this the latest TSH result
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Just testing TSH is completely inadequate
Which brand of levothyroxine are you currently taking?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi, no my latest result was the November one. The one before that was done as part of a thyroid profile which included the TSH/TPO antibodies. Sorry that’s my fault.
I haven’t had a follow up blood test yet.
Oddly enough when the blood test result came through for the hypothyroid diagnosis I wasn’t fasting and the blood test was done at 11 in the morning so I dread to think what my result would’ve been earlier and if I did fast!
It takes several weeks for each dose to have full effect
Bloods should be retested 6-8 weeks after each dose increase or brand change in levothyroxine
Important to regularly retest vitamin levels. Getting vitamin levels optimal can significantly improve symptoms
50mcg levothyroxine is only a starter dose
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. 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
Teva, Aristo and Glenmark are the only lactose free tablets
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
Thank you very much! I take vitamin D only because I am confirmed vitamin D deficient. I really think I should be tested for the other things though, it’s getting my GP to order them that’s the problem!
And I am sure I’m low in everything else especially iron because I lose a lot of blood through my periods, bruising and when I accidentally cut myself.
I cut myself on a broken ceramic pot the other day in a shop - It dropped out of my hands and when I went to pick it up I thought I wasn’t touching any of the sharp pieces but it was only when I looked down and saw my blood dripping all over the floor and the cash point! I really thought I was going to bleed out as it didn’t stop for minutes on end!
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Hashimoto's frequently 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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
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.
Dry/flaky skin on hands, fatigue, breathlessness, hair loss, hoarse throats in the morning, periods coming earlier and earlier (a problem for me since I’m trying to conceive), heavy feeling in and behind my eyes, cold sweats and cold hands/feet
Hi J_Elizabeth_If you can, I would test thyroid & key vitamins privately. I use Medichecks & they often have discounts on thyroid tests on Thursdays. I would recommend trialling gluten free, as this has improved lots of my symptoms.
Thank you, I will go down this route if the tests are affordable and they get sent to me within a reasonable amount of time as I am off work sick.
The only result I know off hand is vitamin D - all the others were checked ages ago and my haematology specialist won't check them again despite me asking.
It normally takes 3-6 months to get close to an optimal dose of levothyroxine. 50mcg is only a starting dose. It takes 6 weeks for levels to stabilise after a dose increase, so hence months to reach a stable dose. Guidelines when trying to conceive you need TSH 2 or less. Sadly greatly increased risk of miscarriage with higher TSH. You will need to be closely monitored and levothyroxine increased during pregnancy.
Thank you, yes I thought trying to conceive might be out of the question at present. Periods are all over the place as well so I have no chance of knowing when I ovulate because of my periods coming and going when they please!
I feel your pain. It took months to get my dosage right. Even though my results were coming back fine I still felt rubbish. I tried for over 12 months to conceive my first son and it wasn’t until I had a blood test that they found I am B12 deficient. Started injections after that and felt great and I conceived not long after. I conceive first go (much to my husbands annoyance 🤪) with my second son. Who knew a little tiny vitamin could have such an impact! Make sure you get them tested.
Your doctor should up your dose. 50 is very low. When I was first diagnosed my first doctor put me on 50 too. I was a mess. My second doctor upped the dose right away. I have gone round and round with endos for the last 17 years. I now take NDT (which I hope we can buy next year) and my endo actually listens to how I feel as well as looking at the numbers. Too many doctors take forever to dose and only look at TSH. Good luck.
I have hypo thyroid as well and also take levothyroxine. I would strongly suggest asking to get your iron checked because that explains some of your symptoms. How long have you been on it? It can take about 3 months to level out. And it is very important that you take levothyroxine an hour before taking any othe medication or eating anything! Other whys it can't work properly. But I have most of your symptoms and I try to deal with each symptom for dry skin I use aquaphor and slather it on the back of my hands and put rubber gloves over. For the dry scalp I take vitamin E oil and put it on my scalp about 24 hours before I shower twice a week. I also take vitamin D pills to try to help with my mood and energy but who knows how much that helps. And for your iregular periods and trying to convince, keep a good thermometer by your bed and the first thing you do before you get up before you do anything is take your temperature and chart it. When your temperature raises just slightly you are ovulating and can conceive on that day. This next part may not be best for young people to read. You can also with a clean hand feel the inside of you vagina to feel the texture of your vaginal discharge. If it kinda feels like conditioner then you are probably going to have a period soon or have just had one when it is really stringy and mucusy almost like snot ( not the most attractive deception, but you get the point) then you have the green light for sex because you are ovulating or will be very soon. The mucus acts as a highway for the sperm to go right where they need to go. I also have extremely irregular periods like one month I will have non stop bleeding, then the next month I will only bleed for a week. But they are so bad I have to take clotting medication. But I have 3 beautiful boys. So you can have a baby with most up periods. I am sure you already know this if you are still exhausted and have to motivate yourself to get up to pee getting pregnant is going to make it way worse. So if I were you I would wait until I had more energy. But its never to soon to chart.
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I really thought I was going to bleed out as it didn’t stop for minutes on end!
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Ongoing or returning thyroid disease?
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