Hello. I posted here some weeks ago when my GP decided my problems were caused by premature menopause and didn't want to treat my raised TSH. I got some great advice, so thanks everyone. Basically I went back to the GP with NICE Guidelines and Thyroid UK symptoms all printed out and managed to move forwards a bit. I also got print-outs from the receptionist that show me as:
The GP prescribed me levothyroxine and I was delighted. However when I picked up the prescription I found it was only 25mcg. About a week after starting I suddenly felt AMAZING for 4 days, it was wonderful. However I then crashed overnight and am now back to sluggish exhaustion and struggling to do anything.
I phoned the GP and asked if I could be bumped up to 50mcg. She adamantly said that she won't raise my dose. Because my antibodies test came back as normal she feels that I should just take 25mcg for three months and then make a call about whether to continue that low dose or stop altogether. I'm also struggling to get her to test ferritin and vitamin D.
So now I'm not entirely sure where to go from here. I'm in an area with just one GP practice. I'm really broke at the moment so can't afford to go private but may try to see another GP at the same place. What can I wave in front of them? I could also pay for a more thorough medichecks test but I will need to wait to payday, and now I'm not sure if I should be doing this test a certain number of weeks after starting the levo to get an accurate check on how everything is going?
Thanks in advance for your comments.
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•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.
•The initial recommended dose is:◦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.
◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
Althought the NICE Clinical Knowledge Summary states dose adjustments every 3-4 weeks, we always suggest 6 weeks initially, then 6-8 weeks, this gives time for hormone levels to settle on the new dose.
I think your GP will play on the fact that your hypothyroidism was "subclinical" - this is when TSH is over range but not reached 10. Primary hypothyroidism is diagnosed when TSH goes over 10.
However when I picked up the prescription I found it was only 25mcg. About a week after starting I suddenly felt AMAZING for 4 days, it was wonderful. However I then crashed overnight and am now back to sluggish exhaustion and struggling to do anything.
This is typical. You were given Levo because your thyroid wasn't producing enough thyroxine itself. Taking the 25mcg Levo is enough to switch off your own thyroxine production but doesn't give you the extra thyroxine that was needed in the first place. It would have been better to start you on 50mcg, but you definitely need an increase and you shouldn't have to wait 3 months.
I should just take 25mcg for three months and then make a call about whether to continue that low dose or stop altogether
I wonder what she has in mind when your next test results are through? It's very likely that your TSH will have reduced, maybe come into range. That's what it's supposed to do, but is she going to continue prescribing or stop, I'd love to know her thinking.
Serum B12 - 315 ng/L (180-2000)
Serum folate - 5.6 ug/L (2.8-20)
These are in range so will be of no concern to your GP. However, they are too low. Look how wide the B12 range is and your result shows your level to be just 7.42% through the range. Many people with serum B12 in the 300s have been found to need B12 injections. Check for signs of B12 deficiency here:
If you have any you should list them to discuss with your GP and ask to be tested for B12 deficiency/pernicious anaemia.
You haven't given the unit of measurement for the B12 - pmol/L or ng/L or pg/nl (the latter two are the same. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Your Folate is low in range, folate is recommended to be at least half way through range.
If you have no signs of B12 deficiency you could supplement with a good B Complex containing methylfolate and methylcobalamin (eg Thorne Basic B or Igennus Super B) which will raise both folate and B12.
If you do have signs of B12 deficiency then don't take a B Complex because results will be skewed and methylfolate will mask signs of B12 deficiency.
Thank you so much for the link to this bit in the NICE guidelines. It's all really, really useful and it's lovely to have some knowledgeable people supporting me while my GP is being so dire. I think I'll try booking another GP appointment with a different doctor in my practice and see if they can at least bump me up to 50mcg levo then re-test because I can't actually function and do my job while I'm at this level of exhaustion. I'm freelance and part of the reason I'm struggling to get money for private tests is because my productivity has nosedived over the course of the year.
All of that is so interesting about anaemia. I actually didn't know there was a difference between B12 deficiency and pernicious anaemia. I don't think I have the symptoms associated with pernicious anaemia but my mother has struggled with low ferritin for years, as did my grandmother (and neither my mother nor I can eat gluten). I have asked the GP to do a ferritin test repeatedly. Last time I saw her she told me she'd done this and it came back normal but when I got my test results printed out I found that it hadn't been ordered!
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,ferritin folate 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 D and ferritin levels NOW
You will need to get full Thyroid testing privately as NHS refuses to test TG antibodies when TPO antibodies are negative. Yet we see many Hashimoto's patients on here who only have high TG antibodies and often struggle to get diagnosed
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.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Getting vitamins optimal should help increase TSH so you can get Levothyroxine dose increased
B12 and folate are low - as SeasideSusie says.....if you have low B12 symptoms getting full testing for Pernicious Anaemia before starting on any B vitamins
Thyroid bloods should be retested 6-8 weeks after each dose increase
Unless over 60 years old you should have been started on 50mcg Levothyroxine.....
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)
Thank you so much for this SlowDragon. I had mistakenly thought that TG thyroid antibodies were for Graves and TP were hashimotos, so I wasn't worrying about that second test too much. I'm going to try and scrape together the money for the medichecks thyroid ultra test so I can get a fuller idea of what's going on. Do you think I should be waiting 6-8 weeks after starting my 25mcg of levothyroxine before taking this test? I wasn't sure if my thyroid levels might be swinging around because I'm in the first weeks of starting meds?
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.
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
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