2 years ago I was out on leveroxine 50 mg??? The small dose for hypothyroidism and it's not been changed. I think I’ve been forgotten about but I have a fear of drs in general.
I had a blood test done recently with the nhs Exeter service and the:
TSH is 65.4
the TPO is 296
My TPO was not tested before and I tried to get them to test 2 years ago but everything is a fight which adds to wanting to interact with the gp.
I’m surprised the TSH is high being on leveroxine as 2 years ago it was under 10.
is suspected the TPO to be present as I had a feeling it was autoimmune related. Another worry as my gran died of thyroid cancer and her prior symptoms pointed towards Hashimotos.
Exams why I feel awful potentially and I will need to speak to the gp.
I suppose I’m just reaching out for any advice basically and similar experiences etc…
Thanks
Xx
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Pezzyp
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.
It looks like you have been left on a starter dose for far too long and you must feel terrible. After you start on levothyroxine you should have blood tests run again after 6-8 weeks. Your dose should then be raised and the process repeated again in 6-8 weeks until your TSH is at or just under 1 where most people feel well.
Having been under medicated for so long, no doubt you will have very low vitamin levels which will make your symptoms worse. When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.
Yes I followed all the advice with doing it early before meds etc. it’s why I do the private testing when needed as the gp never books at the correct time and doesn’t offer any of the advice stated here or online at all. It’s frustrating and sometimes it’s been at the surgery and others at a hospital for whatever blood tests in general. But the thyroid ones testing they seem inept with advice.
I have wondered about vitamin levels especially B12. I feel so ill and ache so much. My skin keeps peeling and I’m so tired.
I will not order a test for vitamins then as it was on my to do list. I have other health issues that talking with the gp I feel like a pain and needy so I prefer to hide until I’m in serious trouble.
You are in serious trouble now with a TSH of 65.4. Has your GP surgery been in touch with you? If they haven;t then you must contact them for an urgent appointment even if its a phone appointment.
Now that you have hypothyroidism you will ned to be seeing your GP and visitng the surgery for regular blood tests and getting prescriptions. Thats something you do need to accept as part of your life now and you aren't a nuisance at all. It is our right to see a GP if we are unwell which you certainly are.
I'd recommend ordering the vitamin tests and trialling a strictly gluten free diet.
Gluten can cause issues for some with raised antibodies like yourself. This is the autoimmune form of hypothyroidism called Hashimoto's. Removing gluten from the diet can improve symptoms for many.
Absolutely. I’ve been gluten-free now for 2 months and I feel much less clogged and my digestion is so much better. Will test thyroid antibodies soon. It’s not easy removing it but you do get used to it. Best of luck.
All hypothyroid symptoms that should improve as dose levothyroxine is increased, vitamin levels improved and (very often) gluten free/dairy free gives significant benefits
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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
Hello Pezzyp I'm so sorry to hear how your GP left you on a starter dose and has done nothing since.. A TSH of 65 should have had them racing to the phone to call you. Shocking they haven't. My GP did the same left me on a starter dose for over a year and of course I declined and I had a hight TSH too. I ended up going private to see a fantastic doctor who instructed the GP what to do who sorted me out bless him but sadly he has passed away. You will receive excellent advice on here.
It's really important that you become a patient expert in your condition because GPs are generally incredibly ignorant and more often than not leave people under treated. Slowdragon has given you excellent advice. In addition I would read up.... Have a nosey at Thyroid UK website and consider purchasing a book about Hypothyroidism. Living with your Thyroid by Barry Durrant Peatfield is a good one.
To get well you need to be treated optimally and to ensure the vitamins minerals mentioned are optimal too.
You will have to champion your cause with your GP..... But you can do this politely, after all it IS your health not theirs that is at stake here.
Well done you! 🤗 absolutely yes get them to do the blood tests if you can, if not get a private one, chances are you are going to be pretty low on things having been left on a low dose for so long
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