I was diagnosed with hypothyroidism and started medication in August. I'm currently on 75mg of Levothyroxine, my last TSH result 5 weeks ago was 22, I've had a blood test since but don't know the latest yet. At diagnosis it was 44.
I was referred to gynaecologist under the 2 week wait. Examination had no concerns. Consultant believes I'm very under-medicated and that's what I'd causing it but she wouldn't interfere in the dose etc. Had a scan and radiographer said no obvious cause.
Obviously it's great there's nothing serious to be seen, but is being under-medicated a likely cause? I had a reasonably regular cycle before medication, heavy but predictable. For the last 30 days I've only had 3 with no spotting/bleeding (1 of which was when I saw consultant)
I'm 42.
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FriedStuffWithCheese
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Bloods should be retested 6-8 weeks after each dose increase
A TSH of 22 shows you are still very hypothyroid
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies 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 and thyroid antibodies if these haven't been done yet
ALWAYS get actual results and ranges on all test. Easiest way is to register for online access to your medical record and blood test results (if available)
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, best not mentioned to GP or phlebotomist)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Levothyroxine should always be taken on 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 more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away
Thanks for your reply. I've been on 75mg since 17th September, I take 3 x25, brand is Mercury. I do blood tests early as that works best with my child care. I do have low Vit D, I've got supplements for it. My antibodies were positive about a year or 2 before my TSh went out of range.
Everything I've read suggests medication should help settle menstrual cycle but the gynaecologist seemed sure the underactive thyroid is the cause. She said I should be on 150mg and it's dangerous for me to drive as I might fall asleep and crash (!) But did walk back on those comments.
I just feel a bit downhearted that I feel worse rather than better.
I'd had the first week at 25mcg but yes I was on 50mcg with the 22 TSH result.
I had my blood test last week and my medication review is tomorrow. When I had the test it didn't stop bleeding with pressure and the phlebotomist asked if I was on blood thinners. It did stop and there's no bruise or anything but I'll ask tomorrow if there's any significance.
I take 2 x20,000 for vit D (1 tablet twice a week) my level was 31.
Gynaecologist said I should ask for blood sugars to be tested but I that's based on being so overweight and carrying on stomach. I've put on 3 stone this year alone and weight still going up.
I'll ask about other tests but I don't have any symptoms of coeliacs so don't think they'll agree. They won't test hormones as I'd asked previously so I might look at private tests to see if there's anything there that might detect why I'm experiencing bleeding etc.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
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
You don't need to have any obvious gut symptoms
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
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
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
I am grateful for all your advice but going gluten free would be very difficult for me. It's the intermenstrual bleeding I'm finding the most problematic atm, and what I'm focusing on for the time being.
That's interesting. I did have a couple of bouts of mid cycle spotting before, but it's been a lot worse since being medication. Have you found it settles down at all?
I hope you're feeling better soon. I've just got an underactive thyroid so much more minor. When I started medication I was expecting to feel better not worse.
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