Over the past year, I've felt deep rooted tiredness for no reason - I'm a healthy (I thought) 30 year old, who exercises, has a perfectly normal BMI, and a normal diet.
Last year, I was tested for thyroid issues and came up on the borderline so nothing was done. Then a couple of months ago I went for an ultrasound on my neck, for another reason, and they discovered that I only have half a thyroid gland. Blood tests then confirmed that I have an under-active thyroid.
When the doctor listed off the symptoms (cold feet, low moods, dry skin, irregular periods, tiredness, difficulty focusing) it all made so much sense. I've been put on 25ml of Levothryroxine.
For the first month I felt fine, but since going on my second packet (it must be a different brand as the tablets were a lot smaller) I've felt awful. Serious cold, aching body, pressure headache, blurry vision (I had my eyes lazered 2 years ago). Reading some posts on here - could that be related to the Levothryroxine?
Some other questions I have (and I have a lot as I've not really been walked through anything from my GP, they have seriously played it down from what I have been reading online) are below. I'd be very grateful to hear from others. I'm not seeing an endocrinologist until April!
1.How long until my menstrual cycle starts being normal? I'd like to think about kids quite soon, came off the pill about 7 months ago and have only had 2 periods in that time.
2. How could I have half a thyroid gland when I've never been operated on?
3.Should I get tested privately? And if so, is there anyone you can recommend?
4.What else should I know about the condition? Should I be eating differently? Taking different medicines?
Thanks in advance!
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NatClarke
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Quite a number of people have unusual thyroid glands. They vary from having no thyroid at all, through thyroid glands in the wrong place, to partially formed thyroids.
Ideally, you would have an iodine uptake scan to show whether you have any other thyroid tissue. (In some, the thyroid fails to descend from where it originates, at the back of the tongue, down the thyroglossal duct, to its usual location. That is called a lingual thyroid.)
In the UK (and many other countries) the heel prick test identifies those with no thyroid but is less successful at identifying those with partially formed thyroids - and useless at identifying thyroids in other locations.
At this moment, it is unclear whether you simply do not have enough thyroid tissue to produce adequate thyroid hormone or something else is stopping it working properly. (Many of us never know why we became hypothyroid - me included.)
Before getting another test, get hold of the results of the tests you have already had.
At your age you should be started on 50 ug thyroxine, not 25. The smaller dose is only suitable for first diagnosed elderly people (over 70). Thyroxine dosing acts like a curved response with negative effects at lowest dose leading to positive effects at higher dose. At low 25ug doses this can lead to suppression of the remaining thyroid gland making the T4, which is not compensated by the small T4 dose trying to give you the extra T4 you need. So the net result is that your T4 overall may not be much stimulated and could actually drop, making matters worse. 50 ug is always the recommended start dose. Now at this dose and higher, the T4 you take outweighs any reduction in T4 made by the thyroid.
Thanks for the info - I'm going to try to get hold of my original blood test. I've got another one booked in 2 weeks time, which will make it roughly 10 weeks since my first.
How long have you been on only 25mcg? it takes roughly 6 weeks for each dose to be effective, then ready for next dose increase
Bloods should be retested 6-8 weeks after each dose increase
Have you got a blood test form to get bloods tested?
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
See GP to test vitamin levels and thyroid antibodies if not been done
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
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 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
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.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
Thanks so much for all the info - I've been on it for about 7 weeks now (on my second pack). I don't have my original results, but I'm going to ask for them, and I'm going to bring my check up blood test forward. I'm also going to arrange a private test.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Most thyroid patients find testing 6-8 weeks after any dose change
Likely to eventually need 1.6mcg per kilo of your weight
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.
Morning, I've got my blood results from my first test from beginning of November - I didn't actually go on Levothyroxine until beginning of December. I was tested for a whole range of things but here are the results relating to thyroid.
Serum free T4 level = 10.9 pool/L Low
Serum TSH level = 4.5 mU/L High (0.27 - 4.20)
Serum ferritin = 111 ug/L
I've ordered a full test at home kit, and seeing a private doctor next week. Are you able to help me read what the above means?
Thanks for the advice. I'll push back my medic appointment in that case and wait for the results from my home testing kit! Thanks very much for your help.
I've just had my results back from Thriva. It looks like my TSH has gone up since going on the Levothyroxine - my test 8 weeks ago was 4.5. I'm seeing a private doctor tomorrow. Any recommendations or things I should ask?
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