Hi, I found this site when I was Googling about Levothyroxine, migraines etc & have just signed up.
I have had a low thyroid level for about 15 years and have been on 100mg dose of Levothyroxine ever since. I would regularly get terrible migraines and be out of action for 3 days at a time. The migraines had been getting worse & more frequent and it felt like my back & neck were completely locked up and on fire.
I stopped taking the Levothyroxine in desperation and felt lots better as my back unlocked BUT then I was very tired and have had joint pain. I took some Levothyroxine and the migraines returned. So now I am taking it every few days, but still getting headaches and low thyroid symptoms. I need some help please, thanks
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First thing is, do you have any actual blood test results? if not will need to get hold of copies
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max)
Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
Low vitamins are extremely common, especially if you have high antibodies
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly 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
Hi, I have been having an annual blood test but turns out they were only testing my TSH level which was 'within range'. I did some reading on here and asked for a full blood test which was at end of January. Bear in mind that these results are since I am only taking the levothyroxine about 2 - 3 times a week over the last 4 months ...
Serum total 25-hydroxy vitamin D level 30.31 nmol/L [> 50.0]
Below low reference limit
They have given me high dose vit D now & laughed when I asked about switching to T3 as it's red flagged on the system now. I always get different brands of Levothyroxine supplied, and I asked about getting the same type and was told that they can't specify on the prescription. I am currently on Actavis. I previously had 50mg North Star and they made me feel terrible.
Well your results show you are extremely hypothyroid as result of not taking Levo
You need to get settled on a constant dose and retest in 6-8 weeks
Yes it's bloody annoying with brands. The way around it, is to pick up physical prescription from GP and then ring around pharmacies to find brand you want. Small independent pharmacies tend to be most helpful.
There's no ferritin test result or thyroid antibodies
Ask GP to test these
If you have ever had high antibodies result then this is Hashimoto's also called autoimmune thyroid disease
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
If you have high antibodies then ask GP for coeliac blood test first before trying gluten free diet
I will ask for ferritin test & thyroid antibodies test to be done & get some more vitamins. I do have a first cousin who is coeliac so that is very interesting about the gluten / Hashimotos.
I have asked for a script for the Levothyroxine, so will have a ring round - is Actavis a good one or should I look to switch? There seem to be so many.
I am worried about fully starting the Levothyroxine again as every time I take it now I can feel a headache starting & my head blocking up the next day. I have also found that my right ear completely blocks so I am deaf on that side - will this stop if I keep going with the tablets or get worse? I never had this when I was taking it all the time, however I was often taking decongestant every day.
Create a list of the symptoms that affect you or sometimes affect you, then score them from 0 to 10, with 10 being unbearable and something you frequently suffered. You can score them however you want - daily, weekly, after 4 weeks, or every month, but the idea is to be able to work out which brand is best for you.
When you are about to start a new brand score the previous brand, make a note of the brand you've been taking and at what dosage. Eventually you will see which brand is least bad for you.
There are four brands of Levothyroxine available in the UK. See this link :
and look at UK Synthetic Levothyroxine (T4) Tablets.
Another option you have is self-medicating. It gives you more choice, and you can buy NDT and T3 online.
Some people take Levo, find it gives them lots of side effects, but the side effects disappear with the addition of some T3. Some people do well on T3 only. Many people do well on NDT. It is a long-winded and frustrating task to find out what works for you, but it can be done.
You asked if Actavis is a good one. Some people like it, some people don't. Most people seem to dislike Teva. I have no opinion, because I don't take prescribed Levo.All I can suggest is that you start with one you aren't familiar with, and see what happens.
You will notice that two makes contain acacia and two do not. (It is not used as a filler - the bulking agent in Mercury Pharma, for example, is lactose.)
Clutter may be able to advise which has least fillers
We are all different as to which we prefer. Personally I stick on Mercury Pharma, but others can't bear it.
Different brands are not bio equivalent, so every time get different brand it is effectively a different dose. So that's another reason to stick on same brand
We need a constant unchanging dose for body to settle.
Hi, it wasn't really until I started looking on here that I realised that the brand made a difference, which sounds really stupid. So I have basically been switching pretty much every month I think.
My doctors has a dispensary attached and they just give out whatever they have on hand this month - they will only give me a script for 28 tablets at a time. However, I think I will start with the Actavis as that is what I have now, if I can get a script and find a chemist that has it!
Thanks everyone, it is so helpful having people to talk to about this.
I've been told to raise the bed head by 6" to stop migraines. Only finally got up to 6" a couple of days ago so can't say yet if it works - though I did have a bad head when I woke up the other day and it went, so maybe it does work. Worth a try for a couple of bricks or blocks anyway.
I used to have a lot of sinus problems and used NeilMed I think it was called. But I had a lot of teeth, and infection, removed a few years ago which has helped a lot.
Hi thanks for brand info, I have found a chemist who have ordered in the Actavis 100 for me so hopefully collecting tomorrow n will stick with the same thing. I had the North Star in 50mg size which I took twice and then had to take 2 days off work with a severe migraine.
I have taken the Actavis 100mg for two days now and my right ear is now completely blocked up (why why?!) so don’t know whether to leave it today or risk a third dose in a row ...
Why don't you try NDT it could be a lot better for you.
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